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LANCELOT’S PASSIONS

When something grabs Lancelot’s fancy, it becomes a life long obsession!

(Lancelot and his cousin, Megan Nettles. Lancelot loves to hang out with Meagan, her husband Client, and her friends. He loves pretty girls too!)

Lancelot’s Loves:

(Lancelot riding Bogie.)

– His first favorite animal was a Lynx
– His favorite trains are CSX (he still loves Thomas and his friends)
He can tell you the type of engine as they go by… like a GE 20-4
– His favorite cow is a Jersey! He loves anything pertaining to Dairy
farming.  He keeps up with the Hoard’s
Dairyman magazine delivery dates to know when to expect it in the mail! He
checks out the dairies in every issue to see which ones he would like to visit.

(Lancelot discussing Robotic Milking with Dick Waybright at the Mason Dixion Dairy.)

– His favorite horse is Bogie.
Yet he has developed a passion for Draft horses.
– His favorite bird is a Peacock, yet he can tell you about  any species. He cannot have enough bird
guidebooks.
– He loves tools and watching “How it’s Made“, and “The Yankee Work
Shoppe
Lancelot has been reading (Lancelot began Reading
at age 3) and researching his whole life.
The majority of his day is spent bouncing on his
ball looking up
Dairy farms, Draft horses, CSX trains, Hunting and
Peacocks on his computer. He always has several Draft Horse Journals and Hoards
Dairyman nearby to use as reference. His next step is to hand me a hand written
note with a phone number, asking me to call them and see if we can go visit
them. He could care less that if it is half way across the country. All I can say is maybe one day  IF GOD LET’S US!

LANCELOT’S HEALTH

LANCELOT’S DIAGNOSIS
When Lancelot was young my goal was to get him through the day into the
next, if any goodness came from that day it was a blessing, but actually it did
not matter as long as the next morning he was still with me.
..
2008 According to Lancelot’s Doctor’s there is no medical reason for
him to be alive. He should be having major strokes, organ failure,  and he should not be able to walk or talk.
Yet everyday Lancelot is determined to follow through his agenda.
He pays no mind to the fact that he has..
Severe Peripheral Pulmonary Stenosis
Severe Aortic Stenosis
Renal Stenosis
William’s Syndrome
Von Willebrandt’s II B
Chronic Hypertension
Pulmonary Hypertension
Allergic to almost everything
Scoliosis
Joint Problems
Sensory Integration Problems
Etc.
( As of September 2010 Lancelot
no longer has Von Williebrandt’s
Disease)
GOD IS GOOD

2 Corinthians 3:4-5
We have such trust through
Christ toward God.
Not that we are sufficient of
ourselves to think of
anything as being from
ourselves, but our
sufficiency is from God.
Lancelot has had many
wonderful doctors He has had a few that were not so great. Two of them, Dr.
Bridgett Freeman and William Marvin have been with me every step of the way
with Lancelot. I have their office phone numbers, their pager numbers, their
cell phone numbers, and their home phone numbers. We have been to both their
homes. They have heard my voice on the phone many times saying Lancelot’s blood
pressure is up, Lancelot is having some strange symptom, or have you heard of
this new test of treatment. Never once have they  not been there to answer my questions.

( Lancelot and Dr. Marvin)

(Lancelot with Dr. Freeman)

University of Florida Pediatric Cardiovascular Center
841 Prudential Drive, Suite 100
Jacksonville,FL 32207
*’iill6fi;’1,’-il’i”
January ll,2010
Krupavati Maramreddy, M.D.
303 Pine View Drive
Waycross, GA 31501
PATIENT NAME: HOLTON, LANCELOT
DATE OF BIRTH: 0910411992
MEDICAL RECORD NUMBER: 759081
Dear Dr. Maramreddy:
Thank you for requesting a repeat cardiovascular consultation on your patient, I7-Il2-year-old
Lancelot Holton, whom I had the pleasure of seeing at the Pediatric Cardiovascular Center today
with his mother.
SUMMARY OF FINDINGS AND MANAGEMENT RECOMMENDATIONS: Lancelot has
Williams and von Willebrand’s syndromes: He has been clinically stable. He continues to have
a degree of bilateral branch pulmonary artery stenoses with the right somewhat less than the left
which has responded nicely to his infantile bilateral balloon dilation angioplasty performed at
Boston Children’s Hospital by Dr. Lock. At that time and subsequent catheterization he was
noted to have tubular hypoplasia of his entire descending aorta. Please note that this was recently
again evaluated by Dr. Faris Al-Mousily in Gainesville by MRI (05/2008). This hypoplasia has
remained remarkably severe and unchanged in comparison to the patient’s clinical state that is
the size of his descending aorta just proximal to the diaphragm is approximately 7 mm and at the
iiiac bifurcation is 4-5 mm in diameter. Despite his anatomic substrate Lancelot continues to
have higher blood pressures in his legs than in his arms and to have no increase in his left
ventricular mass index. He continues beyond antihypertensives as directed and followed by Dr.
Tolaymat in that clinic. He continues to be on numerous supplements provided by Dr. Bridget
Freeman including adrenal thyroid supplements and lithium as part of her holistic care. Based
on today’s findings which continue remained rernarkably unchanged I have asked Lancelot to
retum p.r.n. or in 6-12 months for repeat cardiovascular physical examination, EKG, limited 2-D
echocardiog&ffi, and for extremity blood pressure recordings. He can be active to his level of
comfort. He does not require SBE precautions. There are no absolute cardiovascular
contraindications to medications, anesthesia, surgery, however the risk of sudden demise with
stressful interventions has to be recall by all. The mother is fully cognizant of our findings and
recofirmendations.
1of 3

Patient Name: LANCELOT A. HOLTON
MRN:759081
DOS: 0111112010
SUMMARY OF INTERVAL HISTORY, PHYSICAL EXAMINATION AND LABORATORY
DATA: Periodically Lancelot does complain of some lightheadedness and tiredness. These
have been noted around Thanksgiving and other times. Sometimes he has a headache and
weight gains at night. The mother is concerned that his blood pressure has been lower than in
the past. She keeps inaccurate diary and shared that with me today. When his blood pressure is
lower she noted that his blood pressures run from 100-120 and I reassured that he should do
well. At point in time, now almost 10 years ago he had a transient ischemic attack, but
subsequently has had no reculrence of any neurologic symptoms nor has he had any sequelae
from that event. He is known to have involvement of his great arteries at his transverse arch and
the beginning of his aortic hypoplasia at the aortic isthmus. He has no complaints of chest pain
or palpitations. He has had no syncope, cyanosis, or dyspnea. He is able to accomplish his
physical activities without any difficulty. He has had no hospitalizations, surgeries, or major
illnesses in the interval. She reports no new problems. Under the review of systems. There
have been no changes in the family medical or the family social history. Lancelot remains
allergic to Ceclor. His immunizations are up to date. He continues to take atenolol 50 mg by
mouth twice a day, and Vasotec 10 mg by mouth twice a day. He sometimes takes Benadryl at
night. He is not changed his holistic supplements.
On physical exam today, Lancelot had a weight of 42.6 kg and a height of 161 cm, both
symmetrically beneath the 3rd percentile. His heart rate was 62 and respiratory rate 19. His
blood pressures were right arm 116158,1eft arm 11616l, right leg ll3l73, and left legll0l72. He
has a phenotypic features of Williams syndrome. He was well-nourished, well-hydrated,
acyanotic, and in no distress. He had no cranial bruits. His chest was clear to auscultation. His
precordium was quiet to palpation. His rhythm was regular. His first heart sound was normal.
His second heart sound was narrowly split and closed. He had a Grade II/VI pulmonic systolic
ejection munnur at the left upper sternal border, which could be heard faintly and symmetrically
in all lung fields. Diastole was quiet. He had no clicks, rubs, 53 or 54. Abdominal examination
reveals situs solitus without hepatosplenomegaly. He had a prominent aortic bruit that in the
midline was lower than his precordial munnur, Grade II-IIIA/I. There was no thrill. It was
slightly louder throughout his left abdomen than his right abdomen. Peripheral pulses were 1*
throughout and perhaps even slightly greater in his legs than his arms. He had no delay. He had
a brisk capillary refill without peripheral acrocyanosis.
Lancelot continues to have a normal EKG. He had normal sinus rhythm, without conduction
delay, or dysrhythmia. He had normal QRS progression without hypertrophy. His 2-D
echocardiogram with Doppler interrogation if anything remains remarkable and somewhat
improved. He continues to have normal chamber dimensions, with normal left ventricular mass
index and a left ventricular ejection fraction of 73oh. There is a peak instantaneous gradient up
to 45 in his proximal descending aorta. However the signal in his descending aorta is absolutely
normal and consistent with his coarctation. He has an 18 mm gradient and a 38 mm gradient
(peak instantaneous) across his right and left branch pulmonary arteries respectively.
2of3

Patient Name: LANCELOT A. HOLTON
MRN:759081
DOS: 0lllll20t0
Thank you for referring Lancelot to us. If you have any questions regarding today,s evaluation,please do not hesitate to contact me at your convenience. If you request, copies of thecomprehensive history (including history of present illness, past medical hisiory, family medical
history, social history, and review of systems), compreh.nrirr” physical examination, and copiesof laboratory reports can be forwarded from our records to your ornce-Hopefully these
summaries are suffi cient.
Respectfully yours,
WILLIAM J. MARVIN, JR., MD
Associate Professor of pediafics
CC: Mrs. Rene Holton
210 South Wheeler Avenue
Douglas,Georgia 31533
CC: ASAD TOLAYMAT, MD
CC: BzuDGET FREEMAN, MD
CC: JAMES E. LOCK, MD
D: 2010011309920368 MT: 23204Dictator: ll7 D:01/t3l1015:35 T:01/14/10 03:22Confi rmation Number : 7 5 692 (l 17 .56.254. 7590g I )
Eleckonically signed by:william Marvin-Jr. M.D. Jan t4 2oto 3:35pM EST
3of3

UNIVERSITY MEDICAL CENTER
PEDIATRIC CARDIAC CATHETERIZATION
NAME: HOLT N, LANCELOT
UMC 759081-4
DATE: MARCH
PRE-CATHETERIZA DIAGNOSIS: PERIPHERAL PULMONARY ARTERY
STENOSIS; COARCTATION OF THE
1
AORTA;
j
POST CATHETERIZATION NOSIS: SEVEBE DIFFUSE BRANCH PULMONARY
,/
AIITERY STENOSES; COARCTATION OF
\ -“*{HE AORTA; SUPRAVALVULAR AORTIC
STENOSIS; PATENT FORAMEN OVALE;
BIVENTRICULAR HYPERTROPHY; LABILE
SYSTEMIC HYPERTENSION.
PROCEDURE: COIVTFIIVE RIGHT AND LEFT
HEART CATHETERIZATION WITH
SELECTIVE CI NEANGIOGRAPHY
CARDIOLOGIST: WILLIAM J. MARVIN, JR., MD
REFERRING ENTITY: NEMOURS CHILDRENS CLINIC
t. INDICATIONS:
This 18 month old male toddler was suspected of having underlying pulmonic
stenosis by an outside pediatric cardiologist in Savannah, Georgia. He had
been extensively followed at the Nemours Childrens Clinic for multiple
anomalies, He was referred to Dr. Ed Bayrre who felt the toddler had
peripheral pulmonary artery stenosis and possible significant coarctation of
the aorta. He scheduled the patient for elective cardiac catheterization at this
time to define his anatomy and hemodynamics. The patient was on no
cardiovascular medications.
HOLTON, LANCELOT
uMc #0759081-4
CATH DATE: 314194
PAGE TWO
il. PROCEDURE:
After sedation with 1 .2 cc. of CM3 intramuscularly, the patient was taken to
the Cardiac Catheterization Laboratory and prepped and draped in the usual
manner, Via the percutaneous technique, a #6 F wedge catheter was
introduced into the right femoral vein and subsequently replaced with a #6
F Berman catheter. A #6 F pigtail catheter was placed into the right femoral artery. Complete right and left heart catheterization with selective
cinearrgiography was performed without difficulty or complication. During
the catheterization, there was unsustained second degree AV block and brief
episodes of supraventricular tachycardia with catheter manipulation, These
unsustained episodes resulted in no hypotension. Following cineangiography,
all catheters were removed and the bleeding controlled by pressure.
Estimated blood loss: 1o cc. Fluids given: Dbw 1/4 NS with 20 mqs. of
potassium chloride/L at 35 cclhr. Contrast given: 53 cc. Omnipaque 35O.
Radiation time: 18.5 minutes. Medications given: o.25 mgs. of Atropine lV.
Measured oxygen consumption: 94.8 mls/min.
ilt. DATA AND CALCULATIONS:
There was marked elevation of both ventricular pressures. The rightventricular pressure was extremely elevated at 145l2O. There was no
gradient across the pulmonic valve. There was severe pulmonary
hypertension proximalto the branch pulmonary arteries. Both the distal right
and left pulmonary arteries were entered demonstrating a peak 120 mm.
systolic gradient. Left ventricular pressure was elevated with a 30 mm.
gradient across the supravalvular aortic area. Additional 35 mm. gradient
was accounted across the aortic isthmus. Despite the multiple levels of left
heart obstruction, intermittently, the patient’s pressures would be as high as
2oO systolic in the descending aorta. Based on these pressures, the
calculated pulmonary resistance, systemic resistance, pulmonary arteriolar
resistance, and the pulmonary to systemic resistance ratios were all elevated.
Cardiac output was calculated to be normal. There were no intracardiac
shunts found and systemic arterial saturation was full.
tv. CIN EANGIOGRAPHY:
Left ventricular angiogram was performed in the long axial obliquebiplane with 20 cc, of omnipaque 3bo at a flow rate of 30 cclsec. at450 PSr.
HOLTON, LANCELOT
uMc #0759081-4
CATH DATE: 314194
PAGE THREE
2. Ascending aortogram was performed in the AP and lateral biplane with
30 cc. of Omnipaque 350 at a flow rate of 40 cc/sec. at 9OO PSl.
3. Abdominal aortogram was performed in the AP plane with 8 cc. of
Omnipaque 35O at a flo,w rate of 30 cc/sec. at 75O PSl.
4. Right ventricular angiogram was performed in the AP and lateral biplane
with cranial angulation using 15 cc. of Omnipaque 350 at a flow rate of
30 cclsec. at 45O PSl.
5. KUB was performed.
V. INTERPRETATION:
1.
2.
3,
5.
Left ventricular angiogram revealed signif icant left ventricular
hypertrophy. There was no true mitral regurgitation. There was no
ventricular septal defect present. There was excellent left ventricular
f unction.
Ascending aortogram revealed a supravalvular attenuation of the aortic
root with deformity of the aortic valve. There was slight catheter-
induced aortic regurgitation, The coronary arteries appeared normal
without any focal narrowings. There was attenuation of the aortic
isthmus distal to the left subclavian artery which represented the point
of coarctation. There was no ductus arteriosus present. There were
small collateral present.
Descending aortogram revealed no obvious renal artery stenosis. The
kidneys were normal in size and appeared to function normally from a
rad iographic standpoint.
Right ventricular angiogram revealed severe right ventricular
hypertrophy. There was slight catheter-induced tricuspid regurgitation.
The pulmonic valve appeared normal. There was severe main branch
narrowing of both the right and left pulmonary arteries with severe distal
peripheral pulmonary artery stenoses throughout the lung fields
appearing to be greater on the left than on the right. The pulmonary
venous return was normal. There was a patent foramen ovale present.
The left atrium was dilated.
KUB was normal.
Y20
1I LANCELOT, HOLTON
105 UMC #0759081-4 T6/ 55 B0 DOB: 914192
16 MARCH 8, 1994
10l2
*67 145
20
10s
ss m
*
= Saturations
ARTERIAL BLOOD GAS:
Hgb: 13.1 Weight: 1 1.2 kgs.
Resp: 24 pH 7.40 Hct: 37.8 Height: 83.0 cm.
Spontan. pCO2 31 HR: 160 BSA: 0.52 M2
FlA2: 21o/” pO2 1 19
SAT. 97 %
CALCULATIONS:
OXYGEN CAPACIW: 176 ml/Liter
OXYGEN CONSUMPTION: 182 ml/min/m2(measured)
PULM FLOW: 3.1 L/min/m2 SYST FLOW: 3.1 L/min/M’z
EFF PULM FLOW: 3.1 Llminlm2
PULM RESIST: 25,8 mmHg/L/minlm’ ARTERIOLAR: 22.3 mmHg/L/min/m2
SYST RESIST: 30.6 mmHg/L/minlm’ ARTERIOLAR: 28.0 mmHg/L/minlM2
L -> R SHUNT: 0 L/min/m2
R -> L SHUNT: 0 L/min/M’z
QP / QS: 1.0 RP/RS: 0.84 PP/PS: 0.84
HOLTON, LANCELOT
uMc #0759081-4
CATH DATE: 314194
PAGE FOUR
vt. IMPRESSION S:
Anatomic Diagnoses:
l. Severe peripheral pulmonary artery stenosis.
2. Supravalvular aortic stenosis, mild.
3. Coarctation of the aorta.
4. Patent foramen ovale.
5. Biventricularhypertrophy.
6. Labile systemic hypertension.
Hemodynamic Diagnoses:
1. No intracardiac shunts.
2. Marked pulmonary hypertension secondary to peripheral artery stenoses.
3. Systemic hypertension, labile.
Electrophysiologic Dia gnoses :
Transient second degree AV Flock and supraventricular tachycardia
2. Basically normal sinus rhythm.
3. No conduction delay other than transient episodes mentioned above.
vil. DISCUSSION:
The patient was presented at the Combined Pediatric Cardiology and
Cardiothoracic Surgery Conference. lt was the impression of allthat surgical
approach with not be appropriate at this time. lt was felt that this patient’s
severe and unusual anatomy should be discussed with Dr. Lock at Boston
Children’s Hospital for interventional catheterization. Following those
discussiorrs with Dr. Locl< who agreed to treat the patient.
William J. lVldrvin, Jr./ MD
Division of Pediatric Cardiology
University of Florida Health Science Center/Jax

God
knew my limits. He knew Dr. Freeman’s and Dr. Marvin’s gifts. He worked it out,
so that two of the greatest Doctors in World were there when I was not
sufficient.

Lancelot’s Diet
O’s & M’s
Cheerios
4 to 5 bowels a day
(Served
dry with a few plain M&M’s mixed in with cereal)

Coke
Whenever
he is thirsty
Coke Ices
1 or 2 a week
Chicken
Mama’s
Fried Chicken Legs
Mama’s
Hawaiian Chicken
Quail
Turkey
Legs
Baked Ham
McDonald’s
Hamburger
Happy Meal, plain, fries, and Coke
No.
7Grilled chicken  plain, Fries, and of
course Coke to drink
Every
Friday
Pizza
Night
Little
Caesars- Hot-n-Ready Pepperoni- Scrap off all toppings and eat crust
Domino’s-
Supreme- Scrap off everything, and eat crust.
Out of
the blue he may eat
Fruit
Loops
Cinnamon
Toast Crunch
Low fat
Chip Ahoy Cookies and Doritos’s-  He
may eat one of these everyday for weeks or months then that’s it until the
mood strikes him again. I do not know why, but he will not again until the
mood strikes.
Strawberry
Ice Cream (I can not remember the last time!)
He cannot
take vitamins; because the smell of them makes him gag… actually the smell
of most foods make him gag, along with the smell of about everything. Looking
at this diet, I nominate myself for the world’s worst mother.
(Lancelot
has never had a vitamin deficiency.)

!

Williams Syndrome Family of Hope

 

2012 Williams Syndrome Family of Hope 5k and Fun Run

Williams Syndrome Family of Hope Mother’s share there stories. Each of the stories is as unique as their children are, but they share experiences that only another Williams Syndrome Mother could understand.

Connect to  WSFOH-website: http://www.wsfamilyofhope.org/

 

 

My
name is Karen and my son is Tyler Quinton.  He is 18 years old.  I will
try to cut down on his story and make it brief, but I tend to ramble on
when given the chance.  🙂  Tyler was a week late, born via c-section
and weighed 6 pounds.  Everything seemed okay.  After 4 days in the
hospital, we had to return daily for lab work because he was a little
jaundice.  He never slept more than 1 hour at a time.  I was exhausted.
After 5 days of this, he finally just slept!  I couldn’t get him to
wake long enough to eat.  I felt for fever and he felt so cool.  I
thought maybe he was just making up for all the lost sleep.  This went
on all day and by evening I was really worrying.  I checked on him and
his breathing was very shallow.  We went to the local ER and the doctor
immediately thought he had spinal meningitis.  He probably picked it up
going back to the hospital for daily lab work. They went ahead and
started IV antibiotics (the only vein they could get it in was in his
head).  His temperature was 95 degrees.  The doctor said sometimes with
newborns, their temp goes down instead of up!  I had never heard of
this.  The doctor sent him by ambulance to a hospital about 25 miles
away to be seen by his pediatrician.  His ped did a spinal tap and Tyler
started having seizures during this.  He also heard a heart murmur that
had not been there at birth.  He wanted Tyler sent to the Children’s
Hospital in Birmingham, Alabama to have his heart checked.  Tyler was
flown 2 hours away.  It was so hard to see him being taken out to fly
and it would take me 2 hours to get to him.  When I got to Birmingham,
Tyler was in his own isolated room with his own nurse.  We could only
see him every few hours and had to wear gowns, caps, masked, etc.  After
2 days we found out he had viral meningitis and that his body should
fight it and he should be fine.  This same day, the pediatric
cardiologist from University of Alabama came in to find out what was
causing the heart murmur.
He did an ultrasound while I watched and
said Tyler had supravalvular aeortic stenosis and that he probably had
Williams Syndrome.  I was floored!  Remember, this was 18 years ago…I
couldn’t grab my phone or computer and look this up!  My sister went to
the University library and found 1 short article about WS that was quite
depressing!  The cardiologist had genetics come by the next day to
confirm and they felt like he did have WS.  This was also before we knew
about the FISH test.  The geneticist gave the number for the WSA and
our journey began.  My world completely changed when Tyler was 2 weeks
old!  After 7 days in the hospital, Tyler was able to come home.  Tyler
would not sleep more than 1 hour at a time.  The only way he slept was
in a bouncy seat beside my bed with me bouncing him every hour.  When he
grew out of the bouncy seat he slept in a swing with me getting up
every hour to  wind the swing.  The swing broke one night and I spent
the night pushing the swing with my arm hanging off the bed.  I worked
full-time during all this and drove 35 minutes each way to work.  I have
always said I had a guardian angel driving my car because I was so
exhausted, I never remembered driving.  From the swing, Tyler finally
would lay in bed –only with me.  He was very restless, but I got much
more sleep anyway.  I was in heaven with 4-6 hours of sleep even if it
was put together in 1/2 – 1 hour bits.  Tyler also had colic terribly.  I
had to tell the ped what to check for and had him check Tyler’s calcium
levels.  His levels tested at the max level of normal.  I went to the
grocery store and checked every can of formula on the shelf and found
the one with the least amount of calcium.  It was Carnation Good Start.
It had much less calcium than the others.  Tyler was sooo much better
within 3 days on his new formula.  He had torticollis surgery at 5
months and again at 10 months.  Things started settling down with sleep
patterns, etc. after 3 years.  He walked at 3-1/2, potty-trained at
4-1/2.  He started an early intervention program at 3 months and went to
the school system early intervention at 3 years.  He was mainstreamed
until 5th grade and has been in special ed classes since then.  We have
been blessed with good health.  His heart stenosis is mild and has never
needed surgery.  He has scoliosis and wore a brace for years.  His
curvature is 30 degrees and didn’t need surgery.  Tyler was involved in a
research project with Dr. Mervis when she was at Emory University in
Atlanta.  He saw them once per month for years.  Dr. Mervis gave me so
much information.  She was my lifeline.  Then, as time passed I was able
to connect with others over the internet.  It has definitely been a
different life than I ever expected.  I can say that Tyler has taught me
more than I ever thought possible.  He has definitely changed my life
for the better.
Hi everyone. This is Logan’s journey so far….It pretty much began when I was pregnant, Logan wasn’t growing and I
had a lot of problems with flows through the umbilical cord.
I was induced at 38 weeks, he weighed 4lb, so tiny.
When he was just 4 weeks old he was in hospital with bronchiolitis, we were in for 8 days, it was here that it all snow balled.We met the wonderful Dr Adamson, she discovered his heart murmor, and
once out of hospital we visited her every 2 months. In the beginning she
thought Logan may have Noonans Syndrome. His cardiologist was the one
to discover his high BP, but his pulmonary stenosis over time became
milder.
Then last year in September
at a routine visit to Dr Adamson, a BP check showed Logan’s BP at
147/99. She admitted him straight to hospital and there the tests began.
He was diagnosed with hypothyroidism, hypercalciema and then on the 6th
day WS.
I have never been upset about the WS, I know I’m so blessed
just to have him, he is so beautiful. But the medical conditions at the
time were so serious, I was a nervous wreck! But I kept it together,
despite a cannula that leaked into his arm tissue causing his tiny arm
to swell to the size of my bicep and then in the rush to provide pain
relief they overdosed him on codeine, he ended up being just fine and we
left the next day, but I am forever traumatized!!
Logan is gorgeous
funny and so so sweet. He has his medications every day, is on a low
calcium diet, he has a 3 hour daytime sleep, then goes to bed and sleeps
from 7 to 7am. The first 6 months though  were pure hell, he screamed
constantly, I never had a “screamer” before, my other 2 were never like
that. But once his umbilical hernia corrected itself he settled into
sleeping much better. Logan also has ptosis in his right eye ( i think
that is the word).
Thank you for reading our story.
Hi I’m Cheryl and this is ethan’s story:I had a normal pregnancy and Ethan came on his due date weighing in at
6lb 7oz. Everything was find for about the first three months. Except
for him not being able to poop without a q tip. A few days before he
turned three months old Ethan stopped breathing. He stayed in the
hospital for a week and all they found was the murmer, so they sent us
to the hospital in new Orleans. We stayed there for another two weeks
before we got a diagnosis of hypothyroidism. A few days after that the
geneticist walked into the room looked at Ethan and said “Thst baby has
Williams Syndrome” he ran the test and there it was. We were sent home a
few days later and the whole ride home Ethan cried. When we got into
town I took him straight to the hospital because e had a
fever of 104. It was pneumonia. They put him on oxygen and while we
were there the cardiologist told us he had pulmonary artery stenosis and
that eventually he’d need balloons to widen his arteries. He also told
us that we were extremely lucky because other kids with Williams
syndrome have much more severe heart problems. We stayed I the hospital
another week and left with an order for continuous oxygen and a home
health nurse visit once a week, and rx for captopril (blood pressure)
and Levothyroxine (thyroid). He had appts every three months with the
cardiologist but he kept puttin the ballooning off because Ethan was so
small. Ethan kept improving! His appts went to every six months.  We
recently moved and the new cardiologist thought his condition had
worsened so he ordered an MRI this past feb but everything was fine! Now
his appts are once a year. Ethan is in a special needs prek program and
he gets speech therapy at school. (he’d been getting speech therapy
since 12months).  He’s a little delayed but physically he can keep up
with kids his age. We’re still a wrk in progress i still feel clueless
sometimes but Ethan is so strong and he’s made me stronger than I’d ever
thought I could be! We’re very blessed not to have gone through any
surgeries. Ethan is so loving and I couldn’t have asked for a better
son! ^_^
Hello,
friends! If now, at midnight I do not sat down to write our history I
do not know when I will find  better time ……… I had a normal
pregnancy, my son Miti / Demetrius / was born by planned caesarean
section  on 22.06.2010g. Doctors said he has lucky because he had a true
knot of the umbilical cord, which makes it more difficult feeding him.
On the fifth day his pediatrician heard a noise in the heart. Peripheral
pulmonary stenosis. Doctors said they will track  him heart every few
months. Miti was 7-8 months and I began to feel that something was wrong
because I have another son, age 12. My mother, my father and the father
of Miti “jumped” on me – telling me I’m paranoid that I suggest. Once
Miti was 11 months old – I was 100% sure that something is wrong. On the
Internet I read about the noises of the
heart and there I found a site with pictures of children with WS and  I
was dumb-  I came across a site of the most beautiful angels in the
world, and my Miti bears a striking resemblance to them! Geneticists
only confirmed the diagnosis, which was 100% safe – Williams syndrome.
This diagnosis ruined me. I am a man, a perfectionist, I like to
elaborate everything to perfection. I thought God punished me.I did not
want to live  – I thought that he blew up in life, thinking about
suicide. Doctors in Bulgaria do not know almost nothing about the
syndrome, and I read everything I found on the Internet. Having
recovered from my  initial shock,we began to visit  physiotherapy,
thanks to which a month later he was crawling as fast as a cockroach,
and 18 months he was walking alone, but of fear he feels safer crawl.
Now Miti visit a  Speech Center and all love it there – he is the
smallest and most sweet their patient! Now, nine months after diagnosis,
I believe that Miti is a gift from God, in the evening – tired and
shitty from job I rushing to embrace him and kiss him countless times!!
He is always smiling, happy, sunny child – like all your children with
WS! Now children with WS are my weakness – I love to see pictures of
your kids!
my
name is shelly and my daughter is erica whos 8 years  old.  ericas
story started when i took her to the hospital for breathing problems and
they treated her for browncoitios it never got no better i took her to
her family doctor and said  that erica never had that and plus the
doctor had gave her to much of a treatment and she was lucky to be
alive. She send her to see her peds doctor and there she said something
was wrong with erica so she got her admitted in the hospital they done
some tests found that she had thyroid problems and something wrong with
her heart. erica got admitted to the hospital a second time too for more
tests and finallyy we got an appointment for her heart doctor and he
found she got a mild case of senosis in her left aterie. a couple months
later they diagnoised her with ws. so we have been taking her to speech
therpy ,physio and lots of other appointments to try and help her.
erica has come along way with everything, i am still learning every day.
i love my daughter so much i wouldn’t change her for the world. she
works hard to learn things but when she gets it there is no forgetting
it then.
Good
morning everybody! Well here’s my story. I had difficulty carrying all
of my children. I lost 2 and I have 2. I have a 12 year old girl and
when I found out I was pregnant with Mikayla I ended up in complete bed
rest from day 1. In my last trimester I had a ton of pressure and they
did an emergency c section. Mikayla was 11 days early weighing in at 5
lbs. The pressure I had was from Mikayla gripping onto my umbilical
cord. Her heart rate was irratic but not serious. When she was 2 days
old they found the murmur. But at the same time her hymen never opened
up so she had a water filled tumor that was 5 inches long crushing her
kidneys. She was 18 inches from head to toe. So they rushed her to the
nicu. Once they took care of the tumor they released her. When she was 2
months old we had an appt with the
cardiologist cause of the murmur. They did an echo and an EKG. At that
time he mentioned WS because of the stenosis in her pulmonary and aortic
arteries. But the narrowing in the in one is back to normal and the
other one is only 2% closed. So there is absolutely no concern. Her
kidneys are great and working great and her calcium levels are where
they should be. The reason we got her tested now is because of her
delay. The mention of WS has been in the back of my head for a very long
time, but her peditrician never really saw it. She has the features but
they were not as prominent until now. Even though she has it and we
have the delays and the screaming and the high sensitivity to noises, I
do have to say that I’m very lucky that medically she’s good. Even her
teeth are great. Sometimes I feel bad being on here, but I’m still
learning. It’s only been a month since we found out it’s been a very
long road.
Hi,
I’m  Paige mother of 3. 2 boys 11 & 7, And one little miracle Mary
Grace WS 16mo. We live in Fayetteville, AR. In every way possible she
was a complete surprise to our family!! My pregnancy was complicated. I
have a pelvic AVM which the drs found at the same time I found out I was
pregnant. After a large blood clot developed in my leg, 13 weeks on bed
rest, an emergency c section which the drs didn’t think I or she would
make it through, she was here. She was tiny 5.4. I remember seeing her
and thinking her ears looked weird, but he was so small & my boys
were big babies. She spent 5 days in the   NICU where the drs assured me
she was fine. We went home & at 2 months she developed terrible
reflux w/ projectile vomiting, but more than that she started having
trouble breathing. She was diagnosed at 3
mo with laryngomalacia & bronchomalacia (floppy airways) they
assured me she would out grow it with time, but it did cause reflux. She
was  a terrible eater had trouble w suck/swallow reflex & would
only eat completely asleep. At 4 mo she got RSV & spent 14 days on
the vent in PICU & 14 more days on the floor. She was so sick! After
that she wouldn’t take a bottle again. She got the g tube & Nissen
at 7 mo. She was developmentally behind, but the drs told me not tot
worry and blamed it on everything she went through. I took it upon
myself to see a developmental ped when she was 10mo. The dr did all the
genetic testing & at 12 mo she had the diagnosis. I remember the dr
telling me and feeling both a sigh of relief b/c I knew something was
wrong & I thought I was going crazy & the terrible realization
that now I knew something was wrong. Of course, this isn’t the journey
in my mind I had planned for our family. However, God has always
surprised us and we trust in His strength to get us through. We take it
day by day & we love our little miracle. It is exciting and
frustrating at the same time to see what she does. It’s a learning
process for us, but I know God has some mighty plans for her and all the
lives she will touch! It’s a  journey everyday and we are along for the
ride trying to provide the best support we can for her.
I am Erika, and here is my daughter Abby’s story 🙂

When Abby was born she had low blood sugar problems because of my
gestational diabetes, and she had a lot of trouble learning how to
feed/suck from the bottle.  She spent her entire first week in the NICU
but they let her go home with us the day I was released and said she was
fine.  It was later that night that she started to cry constantly and
scream when we were trying to feed her.  I think we had at least 10-12
emergency room visits during her first 6 months.  Abby had severe colic
for the first 6 months of her life – we tried every formula on the
market and even the specialized ones you have to order and nothing
helped.  At 6 months 1 day it was like the curtain opened and she
started sleeping through the night and the colic disappeared overnight.
I still to this day don’t know how I made it through those 6 months!!

At 2 months of age we took her to a gastro doctor to try and
find out if she had colic or some other problem – the doctor heard a
heart murmur and said although it was probably normal to get it checked
out.  We went to Indianapolis to see a peds cardio doctor and when we
got there he wanted to take her into surgery immediately.  He was under
the impression that she was not thriving, which in reality she was
thriving.  She had been gaining weight and was healthy other than the
developmental delays and colic.  So he told us to come back in 3 days
and we did, Abby had coarctation where the aorta had an excessive
buildup of muscle tissue and it was narrowing the artery.  So on 2/27/07
she went in for surgery and although she had a few breathing issues
afterwards she did great and recovered.  The pediatrician said because
she had this heart problem to have her genetically tested for Turner or
Williams Syndrome.  I checked into a couple of them online, but didn’t
think at the time that she had anything like that.  But I am glad we
went – we walked into the clinic and as we were being led to an exam
room several doctors walked past and of course were looking at Abby.  A
few minutes later the resident came in and said that just by looking at
Abby in the hallway the doctor was 99.9% sure she had Williams Syndrome!
So we had her tested and I guess you know how that turned out LOL 🙂
We are so proud of her, she has come so far in just a few years and
although her developmental delays are hard, everything new she does is
such a joy for me because I know she fights SO much harder than most
kids to learn.  She is such a loving child, she’s our little caretaker
and loves to play doctor and she loves the Wiggles and Veggie Tales.
She does everything on her own time and we just have to wait on her to
be ready.  Forcing her to do things just doesn’t work, so we are slowly
working on potty training right now – but she is just not there yet and I
know when she is she will just do it 🙂  Abby is very healthy except
for bad ear infections and sinus problems (just like mommy 🙁   The only
other problem we have had is terrible constipation when she was born,
but at 6 months the pediatrician put her on Benefiber and she’s been on
it ever since and we haven’t had any problems as long as we give her the
dose every day 🙂  I swear by that stuff because it’s worked so well
for her!!

I am a work-at-home mom right now and Abby is in
Early Intervention Pre-School and is getting ready to go into Special
Education Kindergarten this fall!!!  I am so excited for her and I can’t
wait 🙂  She does so well in school and loves it, she started 2 years
ago and I thought she would have a fit when she had to get on the little
bus and leave me every day.  Again she surprised me – she got on and
never had one problem – never cried at all.  Everyone just adores her,
but I find that it’s grandparents/elderly that REALLY find her so
adorable.  She attempts to play with other kids sometimes, but they are
standoffish with her – it doesn’t really bother her much now she just
goes and finds something else to do!  But she is such a wonderful child
and just like other WS children she has a magnetic charm that draws
people to her 🙂  So that’s our story!!  Just enjoying watching her grow
and learn everyday.

I
guess, I’ll go second. 🙂 Per Kelly’s request….my name is Tricia
Heyde, and I have a 3 year old little girl with WS, she has an older
brother Aidan who is 5, he’ll be six in May!! 🙂 Kendal was diagnosed at
20 months old, and I can’t tell you what a sense of relief and sadness
it was. I was over joyed that they finally figured out what was wrong
with my precious baby girl, but so scared of the unknown. It took me
awhile to adjust to the idea of her having WS, but now I wouldn’t have
it any other way. I love her more then anything in this entire world,
she IS my life. Kendal is delayed like most WS children her age, but she
is doing very well. I have to say, that I feel very blessed that she is
healthy, and most days very happy.

It was such a rough road in the beginning, with the constant
crying, constipation, reflux, slow weight gain etc. At one point I
stopped worrying, because the pediatrician said, we were doing
everything we could be doing for her up to that point. Then all the
sudden at her 15 month check up, she said I think its time to see the
Developmental team at Riley. I was so scared, but they are an amazing
team of doctors, and within minutes they gave us hope. I remember
sitting there thinking, wow, all this time, my gut was right. I knew
from the minute I had Kendal that something wasn’t right. She was so
much smaller then her brother, and she was full term. I looked at her
with such joy, but at the same time, she just didn’t look right. She
looked premature, and that’s what we thought for a long time. Everyone
thought that, and I got so tired of saying, no she was only 6 days
early!!

We have come so far, and she is really doing amazing!!
I love that she attends a developmental preschool, and that she is
simply loved by everyone. I love that I have the support I have with the
WS support group, and now our new family with you all. I look forward
to hearing about everyone’s journey and our kiddo’s getting to know each
other. 🙂

Per
Kelley’s request…my name is Becki Poortinga and my little guy is
Jacob and he is 7 years old. He will be 8 in May. I met my husband when
Jacob was 18 months old. He had just found out that Jacob had WS, so we
have pretty much gone through this whole journey with Jacob as a couple.
Jacob lived with his biological mom until he was 4. At that time, we
became the custodial parents and I gave up my career to be the best mom
that I could be for him and his older brother, Josh. Up to this point,
the journey has had its ups and downs. Jacob is nonverbal and everything
is a mystery. I have learned a lot over the years about his moods. His
moods dictate how he is feeling…if he is smiling and laughing, than he
is happy. If he is flat out mean and aggressive, than we need to see
the doctor. Everything in between is
gray matter. We are blessed to have such a great team of the most
intelligent, intuitive doctors that I have ever met who have provided
the best treatment for Jacob’s needs. Jacob absolutely adores his
medical team and I have the utmost respect for them. When he lived with
his mom, he went to Childrens in Chicago and they treated the illness,
not Jacob. The team at University of Chicago treat the patient and I
think that is why Jacob no longer has anxiety about seeing doctors. Our
journey has been quite unconventional,  but I wouldn’t change a thing,
no matter what! I have enjoyed caring for Jacob and sharing his trials
and triumphs with him. I thank God everyday for bringing my three men,
especially Jacob, into my life. He has taught me so much over the years,
and for that, I cannot ever repay him.
Here
is our story: I had a completely normal pregnancy up to 28 weeks. I am
an ultrasound tech, and while allowing some students at a local college
to practice their scanning skills, we discovered that my daughter was
measuring two weeks behind. I went to my OB doctor and asked them to do a
Cord Doppler (to check the blood flow in the umbilical cord) and found
that my daughter was getting half the blood flow that she needed and
that at any point her blood supply could be cut off. I was rushed to a
hospital with a level 3 NICU, as my doctor believed I would be
delivering within a matter of hours. Long story short, I was on hospital
bed rest for six weeks and all the doctors thought my pregnancy was a
medical mystery. At 34 weeks, Marie-Claire was born via C-Section and
weighed 2lbs 12oz. I didn’t get to hold her until she was three days
old. All the doctors in the NICU thought that she looked “normal” and
that there was no need for any genetic testing. She did have a heart
mummer since birth, but that is very common in premature babies, so this
didn’t really concern any of the doctors. After about 4 weeks in the
NICU, Marie-Claire was having a lot of trouble learning how to feed and
the doctors were still hearing the murmur. They finally decided that it
would be a good idea to do an echo. The pediatrician came in and told us
that our daughter had SVAS and pulmonary stenosis and that those heart
conditions tend to be linked with Williams syndrome. We had never heard
of WS before and I remembering thinking, are you crazy? Our daughter
doesn’t have a genetic disorder! All the tests came back and everyone
knows how that turned out! I was in shock. I cried straight for 3 days. I
was just so overwhelmed with Marie-Claire still being in the NICU and
then all this new information was just more then I could handle. I
remember holding her after we got the test results back feeling so
disconnected from her. After six weeks in the NICU, we got sent home.
Things got better after we were back in our own element and I began to
feel like a mommy. She was colicky from the day she came home, but it
started getting better around 8 months old. Marie-Claire’s heart has
been carefully watched since we discovered her moderate stenosis in the
NICU. At 9 months old, her cardiologist decided that it would be a good
idea if we did a heart cath.  We did the heart cath and the results
surprised everyone. As It turned out, my worst fear came true,
Marie-Claire’s heart was worse then anyone expected. We were scheduled
for open-heart surgery just a few days later. After her surgery the
surgeon came in to talk with us and told us that it was a good thing
that we did the surgery when we did because the condition of  our
daughter’s heart was at a place that “sudden death” is a concern. We are
so thankful that God has allowed us to have our little girl with us
here today. Our 13lb baby girl, just had her first birthday last week
and now that her heart can keep up with body, we are excited to see her
gain more weight and start reaching important milestones like eating
solid food and crawling.
Keith
was born on August 25, 2003 at 39 weeks. He weighted 5 lbs. and was my
third child. As soon as he was born, he was taken to the NICU because he
was not breathing on his own. On day 3, he was breathing better but
they told me something was wrong with his heart. We found out he had a
murmer and Pulmonary Stenosis. They referred us to a Cardiologist and we
were released after a week. Keith could not feed, he gagged on the
bottle and the formula just ran down his mouth. He never slept and he
screamed if I laid him down. I constantly had to rock him and he was
only calm if his body was straight up and down. So I slept in the
rocking chair every night holding him. Sleep is probably an
overstatement…there wasn’t much sleep the first two years. Keith
screamed constantly.There were many ER visits and visits to the
Pediatrician. They all told me it was just colic. When Keith was 12
months, the Pediatrician said he was officially “delayed” and
recommended PT, OT and Speech. I was absolutely shocked. I think I had
been living in denial. I came up with every excuse why he was missing
milestones. I then accepted it, but was on a mission to find out why he
wasn’t talking, or rolling over or eating or crawling. I took him to a
Developmental Pediatrician who could not figure it out, but felt it was
genetic so she referred us to a Geneticist when he was 16 months. The
Geneticist spent 5 minutes with Keith and said WS. She brought us
information on WS and showed us pictures of other kids with WS and I
knew immediately. Of course the FISH test came back positive. I was glad
to finally get a diagnosis so at least I knew what the future would
hold. I joined groups and talked to other parents but still felt like we
didn’t fit in. Keith was so much more delayed than the other kids. I
knew there were variations with WS, but Keith just did not fit the mold.
I still knew something else was going on. At age 3, I took him to see
Dr. Klein-Tasman and she confirmed that Keith was also on the Autism
Spectrum. That was my fear. We also discovered Keith had high blood
pressure and his anxiety was unbelievable at that time. He was hitting
himself in the face and screamed non-stop…..again. We got his blood
pressure regulated with medication and also put him on anxiety
medication. Last year when Keith turned 8, I took him to Wisconsin to
see Dr. Klein-Tasman again as I suspected that he was now full blown
Autism and not just on the Autism Spectrum. He was. Only 8% of the kids
with WS are on the Autism Spectrum and even fewer have full Autism. This
explained why Keith still was not talking in sentences, has poor eye
contact and fixates even more than most. His anxiety and blood pressure
are our biggest battles right now. We raised his meds again last week as
he was hitting himself in the face again. He is on 3 different blood
pressure medications and medication for his Reflux. His reflux still
wakes him 3-5 nights per week and I have to sit and hold him through the
night.
It’s been a long road, but I do thank God every day that he
does not have the heart issues that many of the kids do.
Developmentally, Keith is about 2 1/2 and still does not speak in
complete sentences and does not have reciprocal conversational skills.
We are not sure if he ever will. I love my little man and am so blessed
to be chosen as his mother.
Dawson,
was born on April 12, 2007 at 3lb.4oz, my pregnancy, was difficult. I
was first told that he had Downs Syndrome from my AFP test and then was
sent to a high risk specialist. I was 40 at the time so this wasn’t too
much of a suprise, what was a suprise was that the umbilical blood flow
in the cord wasnt good, I was immediately admitted into the hospital.
They gave  me steroids and  were  set to deliver at 1 pound 2 oz, the
doctor said it would be a miracle if he made it , and then said lets all
pray.  The prayers worked because after 2 weeks I was released and sent
home on bed rest.  I was induced early at 34 weeks and that is where
our journey truly began.  Dawson had the typical fussy, colic
associated with WS,being baby number five I knew something wasn’t right,
I was told he is just a premmie give
him time, still I knew.  At nine weeks he developed inginual hernias and
needed surgery, during the procedure he went into cardiac arrest,
everything that could go wrong did, I was heart broken, his kidneys were
failing, he need a transufusion, he developed a blood clot and needed
insulin to control his pancreas, Family and friends gathered from all
over to support us.  One month later we were released to go home. His
name means warrior so fitting ,he is my fighter. We were told he
arrested from a conditon called Long Qt, which does exist in my family
but is also commom in Williams Syndrome.  The genetic test never was
done until two years later after Dawson began showing signs of scolisos
another sign of Williams,  after two years of being told we had one
syndrome we were finally diagnosed. Truly it was a relief to put a name
to what was going on with him.  He is my heartbeat and I wouldn’t change
a thing. Dawson has made me who I am today, stronger, I fight harder.
Live sweeter..Scoliosis is our battle at this time we have major
decisions to make.  Dawson had an MRI almost two years ago to see the
progression and the pulse ox that should not be used in a MRI was left
on and his toe, his great left toe was burnt off and had to be
amputated, it has caused him an extra challenge to walk, but I am proud
to say he can run now,he overcame I have never been prouder…We fight
for our kids everyday. I came together with other families to start the
Williams Syndrome Family of Hope . We are about Familes helping
Families, friendship ,unity and a true place for each our kids to be the
spotlight..Our goal is to make everyone our our kids feel special work
on giving them extraordinary opportunities,,having fun along the
way…So proud to be the mom to Dawson..I am one lucky momma..Ps yes we
had horrible, awful reflux, prevacid helps, he still wakes at night at
times screaming , I have been told it is night terrors…sleep is
overrated I guess..Hope is an Open Heart!!!
My Madison’s story in a nutshell.At 20 weeks I had an ultrasound to determine the sex of this miracle
growing inside of me and found out more than I had expected. SHE had
cysts in one of her kidneys. I was referred to high risk who informed me
everything else looked good and this is actually quite common, nothing
to worry about. On January 5,2007 Emily Madison was born weighing in at
6lbs 8oz. She was perfect. She had a hard time breastfeeding and was
rather cranky, but otherwise perfect. Her pediatrician called me 5 days
later and informed me that her newborn screenings came back and her TSH
level was 425, normal is 33 or below. So she had to be started on
Synthroid ASAP to prevent mental retardation. At 2 weeks old we met with
the nephrologist who informed us her Multicystic kidney would
within a few months be only scar tissue but her other kidney would grow
to be twice the normal size to compensate. He also noticed she had a
heart murmur and referred us to a cardiologist to “rule out” heart
disease since she already had kidney and thyroid disease. He assured me
it was probably nothing but he just wanted to be on the safe side. So on
March 22 I took her to the cardiologist but rather than ruling out
heart disease it was instead confirmed. She had moderate Pulmonary
Stenosis as well as Aortic Stenosis. With much effort we saw a
geneticist the next week and the following week had a confirmed FISH
test. Today she is very healthy and happy!! Her kidney is double the
size as it should be, she takes synthroid everyday, her AS and PS has
completely corrected itself by the Grace of GOD. She is tiny at 35 lbs
and 5 yrs old but very feisty:) Developmentally she is about 3 1/2 yrs
old. She didn’t eat well until 3 yrs old, walked at 3 1/2 yrs, talking
clearly and a LOT at 5 yrs. Now our biggest challenge is potty training
and dealing with our joke of a school system. So blessed to be her
mother, she has taught me so much about life in just 5 years. So much I
never noticed until she came along. And though it is hard to watch her
struggle with things and it takes her many attempts before achieving
something, it just tastes that much sweeter when  she gets it. Every
little thing is so appreciated and nothing taken for granted. That’s a
blessing in my eyes and I feel for those who take for granted and never
even realize the little miracles and milestones they witness daily. Anywho, that is my Madybugs story thusfar, in a nutshell:)

Anthony
is my fourth son.  I said I was done at three sons but the Lord said
not.  I was kind of upset when I found out I was pregnant again.  Now I
can’t imagine my life without my sweet baby boy.  He is an amazing
blessing!  Anthony was born February 1, 2001 by an emergency C-section
because his heart rate dropped.  He was three weeks early and weighted 3
lbs. and 9 ozs.  He spend 29 day in the NICC unit due to his low birth
weight and feeding problems.  My pregnancy was pretty normal except that
the doctor kept changing my due date because my belly measured small.
Anthony has congenital scoliosis also.  I could tell the first time that
I saw him that his body was curved.  The doctor would not listen to me
and said he was fine.  When Anthony was nine months old he was
hospitalized with RSV.  The doctor that
read his chest x-ray asked me if I knew that he had scoliosis.  After
that we found a new pediatrician.. Anthony was also found to have a
underdeveloped kidney and duplicated urethras.  Our new pediatrician
told me that she believed something was the cause of Anthony’s various
health problems.  She sent us to a genetic testing.  The geneticist told
us that he  suspected Anthony had Williams Syndrome.  The fish test
confirmed it.  I remember the day that we got the results and the
sadness I experienced.  Anthony had disc fusion surgery and surgery to
remove the part of his kidney that did not develop.  He was on
antibiotics for five years because of bladder reflux.  He has been in
the body cast and wore a back brace for a while.  His heart has never
been a issue.  Thank God!  He had problems with his teeth and frequent
ear infections.  But as of today the only real health issue is his
scoliosis.  He may be needing back surgery in the near future.  I have
learned to take one day at a time and be thankful that things are not
worst.  Anthony is the sweetest, most loving child and I am thankful to
be his Mama!
My
name is Stephanie and our daughter is Danielle (4 1/2). Our story
starts with my husband and me wanting to do foster care.  We had our 3
sons and thought we had the resources to try fostering.  We asked for
something easy for our first experience to make sure we could add
another child into our lives. We got a call about a new baby we would
have for two or three months. When we got to the hospital, Danielle
looked so small, yet she weighed just over six pounds. We were told she
had a murmur and would need an echo to follow up in eight weeks. At our
first check up, she was not gaining weight so we started waking her to
feed her every two hours. After a week, she was gaining weight but began
projectile vomiting some feedings. Danielle ended up having surgery for
pyloric stenosis.  This may have helped
some but we still had to watch the amount we fed her. Danielle was an
extremely fussy baby and I felt she was not tracking, not smiling, and
behind overall.  The doctors were not too concerned.  At her echo, it
was determined she needed to go to Mayo for a heart cath. After the
procedure, the pediatric cardiologist told us it was likely she had
Williams Syndrome.  So, like so many others, we went without sleep for
many months and she cried almost nonstop. I remember some mornings, my
husband would find both Danielle and me crying!  Somewhere between 6 and
10 months, she became a happier and a bit better sleeper. We have done
the usual doctors appointments and have many hurdles.  Danielle’s
cardiologist said her case was one of the worse she had seen and be
prepared for her to need a heart and/or lung transplant. This year she
officially went from “severe” to “mild”!  Overall,she is one healthy
girl!  She is your typical Williams child. We all adore our daughter (
officially adopted August 2011)!  She reaches her milestones later than
her peers, but when she does, look out!
On
May 7th, 2010, I delievered a healthy, full term baby Eloise. At her
one month check up a heart murmur was detected. Eloise was rushed by
ambulance to USA Womens and Childrens Hospital for an EKG which revealed
a mild ventricular septum defect with a mild supravalvular pulmonary
stenosis. Our cardiologist was confident in her mild heart defects’
ability to heal on their own and her ablilty to live a normal life while
keeping an eye on her heart. 6 months later Eloise’s heart had almost
completely healed on its own:) However her reflux was getting
unbearable, her crankiness and light sleeping weren’t subsiding, and she
was not hitting milestones. All of these things on their own wouldn’t
cause me to be alarmed, and each was being treated individually (to no
avail). But I had a gut feeling that all
of these had to add up to something, and I was on mission to discover
what it was. Testing, doctors, all couldn’t give me an answer and we
began to work with Alabama Early Intervention to treat her developmental
delays. Just after Eloise’s first birthday, finally, after her MRI
showed nothing abnormal, our neurologist suggested that Eloise had the
facial features of a patient with Williams Syndrome. And that was it. We
of course googled, Web MD’d, and didn’t need any geneticist to tell us
what we knew to be true. After the FISH test and blood work, it was
official. I have to say that my reaction was peaceful. I was incredibly
thankful to finally have an answer, and that our answer was that Eloise
would be a) atypically sweet, b)possibly living with us forever:) !
c)probably very musical and d) sweet, sweet, sweet!. We are blessed that
Eloise has not had more problems, and are working diligently to help
her overcome the odds against her with OT, PT, and Speech Therapy. One
of the biggest surprises was the vast amount support I have found for
Williams Syndrome. I truly feel a part of a large family; one that is
loving, and that I feel blessed to be part of despite how we got here.
As a newly staying-at-home-mom, one of my part-time jobs has become
raising awareness. I am thankful for all of you and look forward to
meeting you and pressing on to help our sweet boys and girls…..You all
rock!!!

Please check out the Forums.

Sharee’s Quest

 
The Heart of Sharee was published in the Douglas Enterprise on Feburary 10, 2010.
It was the 6 month aniversary of her death, and the day of her Papa’s Birthday, my Daddy, and Lancelot’s Papa.
Sharee was my niece not by blood, but by heart. She loved, and fought her way through life. Teaching all of us,
that as long as you have breath your alive… Life the everyday things are a gift to enjoyed.
She also taught me being a Miracle, was not so fun for the person. She knew God gave her strength to fight through surgeries,
yet why had he not made her like everybody else….
She was such a dainty little doll, she brought joy to all our lives.
She was 5 years old when Lancelot was born. Her life helped prepare me. My brother and sister-in-law could help me through
the diagnosis no parent wants to here. Everyday she is missed, but everyday we celebrate knowing she is waiting for us in Heaven.

 

 

THE HEART
0F
SHAREE

 

ECCLESIASTES  3: 1-2, NIV

THERE IS A TIME FOR EVERYTHING,
AND A SEASON FOR EVERY ACTIVITY UNDER HEAVEN:

A TIME TO BE BORN AND A TIME TO DIE,
Laken Sharee Holton was born August 7, 1987: Sharee died August 10, 2009. She came into this world bringing joy to her families’ hearts. She left this world in the loving arms of her mother, taking a piece of her family and friends heart with her. The pain of labor brings new life into a family. The painful death of a love one reveals the precious gift of life.

On the day of Sharee’s birth, the pediatrician found a heart murmur, probably nothing to worry about; lots of babies come into this world with heart murmurs that turn out to be nothing.  He set Sharee an appointment with a cardiologist for November. So Sharee’s parents, Andy and Sherryl Holton, took her home and shared her with friends and family. Sharee’s life had begun!

Over the next 4 months, this tiny baby girl wrapped her daddy around her finger. And any one that saw them together knew that Sharee was a tiny version of her mother. Life was good. The doctor’s office called to reschedule Sharee’s visit to the cardiologist for December.  Her parent’s gave this no second thought it was just a doctor’s appointment.
When Andy and Sherryl walked into the doctor’s office in Tifton, they were Sharee’s parents, and with the help of God protect her from all harm. As they left the Doctor’s office they knew they could not protect Sharee from harm only God could protect their baby girl. The cardiologist had told them to go home and pack their bags. Sharee needed to be  at  MCG as soon as possible: She only had a single ventricle (meaning instead of 4 chambers in her heart she had 3 chambers) and her Pulmonary arteries and blood vessels were underdeveloped, how she had lived this long the doctors could not explain. On December 8, 1987, Sharee was admitted to the pediatric cardiology floor of MCG for the first time. One week and one day later she had her first open heart surgery. Throughout the next 22 years all the doctors’ knowledge and experience would be put to the test, as they tried to give Sharee a longer life and to increase her quality of life. The heart strings of her parents were pulled tightly as they watched Sharee surviving in this world.
It was not easy for anyone, but a fighting spirit was emerging, a will to life like none other it was the essence of this tiny baby girl; it was Sharee.

Psalm 23:4, KJV
Yea, though I walk through the valley of the shadow of death,
I will fear no evil: for thou art with me; thy rod and thy staff
They comfort me.
Sharee spent her life in the valley of the shadow of death, surving everyday of her short years literally fighting for every breath. (Sharee’s normal oxygen saturation was around 77, normal levels are between 96 and 100).  She under went 5 more surgeries, numerous test, endless Doctor’s visits, and last 3 years of her life she was in and out of the hospital. This was Sharee’s normal life. She never knew any different, so she did what we all do she lived each day. And, Boy how she lived!
(This part of the story has been hardest for me. As a writer it is hard to capture someone’s life story in a way that will affect the reader the most, yet I am Sharee’s aunt, and I know nothing I write could possibly convey to readers all that Sharee brought into this world! So I am going to reflect on my memories and thoughts, then I will use some of Sharee’s on words to try show just a glimpse of her life!)
I was working in retail in Orlando when Sharee had her first open heart surgery.  If memory serves me right, I went to see Sharee not long after she got to Augusta the first time, but it would be late December early January before I could get off work to go back. She was so tiny, but by the time I got there she took all the IV’s, Doctor’s, Nurses, and test as common place.  Her life had completely changed yet it did not change Sharee.
When Sharee arrived home, I was the first one to baby sit her.  Andy and Sherryl needed a break after being at the hospital with Sharee so long. They explained her oxygen equipment to me along with the other normal baby stuff. Well, Sharee sleep through all this and when they left she woke up. She was smiling and fine until she looked around and did not see her Mama and Daddy, then she let out a screaming cry that did not stop no matter what I tried. Yes, I kind of panicked: I mean she had just got out of pediatric ICU. She quit crying as soon as her parents returned home! I was so relieved that she and I made it! She took her bottle and went right to sleep. The little angel, yeah right! She was though, she just knew what she wanted, and I was not it at the moment!
Her first birthday was unreal there were so many people. Friends and family were all there to celebrate Sharee’s surving her first year! She was such a little doll. She was the first, yet the smallest of my nieces and nephew that were all born in August old 1987.  Sharee, Wren, and MacKenzie always shared a special bond.

Her second surgery again I was living in Orlando, so I could not be there as much as I would have liked to have been. What I remember the most around this surgery was Sharee saying I want by Daddy! I cannot count the times thought the years those words came out of Sharee’s mouth, and her Daddy would take her in his loving arms, She never doubt her Daddy would love her through anything.( Sherryl was always right there making sure Sharee had all the care she needed, so her baby could have the best life possible)

Sharee loved babies, and Baby Bobby her first brother was her baby! She was not much bigger than him, yet she was determined to hold him and kiss him. If someone was holding him she was right by their side kissing him anywhere she could.
Somewhere along this time Andy and I were alone driving somewhere, I remember him poring out his heart to me about how hard it was to know that Sharee could die at any moment. Needless to say, I said one of those uninformed, stupid things that so often come back to haunt a person,” Andy, anybody could die at anytime”. You cannot think about it all the time, or just enjoy the time you have… (That is the truth, but after I was told my own son could die at any moment, I realized it is not the same thing most of us do not have ticking time bombs in our chest!)
All this time Sharee had her little oxygen tank that went with her everywhere, yet it did not hinder her. She went to her Daddy’s softball games, played with all her cousins and friends from church, she took dance. Sharee did as much as she could then some!
I got the pleasure of going with them to Disney World, so I could take care of Baby Bobby, while they enjoyed this special time with Sharee. We also went to the beach, and Silver Springs. We all had wonderful trip. Yet it was hot and the long lines take some of the joy out of the pleasure.
Not long after that Sharee’s cardiologist arrange for her to get a Wish from Make-A-Wish.
This time Sharee, Sherryl, Andy, and Bobby did not need me to tag-a-long. Everything was catered to make Sharee’s trip to Disney World, a trip of a life time. They were at the Disney Village for a week.
While I was pregnant with my baby, I watched Sharee and Bobby on the weekends. I would set at the Coffee table with them with what seemed like hours trying to get them to eat there greens beans. Sharee and I colored a lot and watched video‘s,, but we had to watch out though, because Baby Bobby (only2) could throw a softball as hard as a grown man, and he would decide to throw it at us when we were not looking. We all danced and played just hanging out, that is until Lancelot came along.
Lancelot was 6 months old when I found out he had a heart murmur, Sherryl came to see me right away. Andy and Sherrly were always understood and listened. When I was told there was nothing anyone one could do for Lancelot could die at any moment. All I could do was think of the those stupid words I said to Andy years before, yes they are true we can all die at any moment, but a parents job is to protect their child from hurtful things, to help them learn and grow to become product people, but all that is taken from your hands. You can do nothing your child is going to die, when is in God’s hands, there is no future to plan for there is only now! Because of Sharee, Andy and Sherryl truly understood what I was experiencing.
Sharee went to school, was Girl Scout, took dance, and even played softball. She could never ride a bike or run as far as other children. She may have been the smallest one in any group, but she was in the group.
Andy and Sherryl had another son, just before Sharee’s Ninth birthday, named John Tyler (J.T.). The years past and Sharee became a teenager. Her doctors put in her first pacemaker around this time. Her brothers had to adapt to their parents being in August with Sharee while they stayed at home with family and friends. That was their normal. Speaking of normal, Sharee was a normal teenager, needless to say she liked to go, go, and go! Oh, yeah she liked boys too!
By the time she reached High school, she was becoming the silly, crazy, Sharee we all loved. Yet her high school years would turn out to be trying on her. Coffee High School is big, and she had a very hard time getting around the campus. Finally Sharee left school and got her GED.
After leaving school Sharee had several jobs. They always took a lot out of her, but she believed in working. Andy and Sherrly got her to apply for disability, and she was accepted.
Her Papa (Bobby Holton) died on her 19th birthday. The day of the funeral at her Nana’s house, Sharee passed out in the road, and was rushed to the hospital. Over the following years Sharee was in and out of the hospitals: Coffee Regional, MCG, and then Emory. Her heart rate could not be controlled, and she was in so much pain! Finally they began talking about maybe a heart lung transplant. Sharee and all her family and friends were so thrilled. Sharee would feel better than she every had she could get married and maybe even have a baby she wanted one so much!. She was placed on a new Bata blocker and sent home to wait to hear from the transplant team. She would have to go back and go through around of test to see if she could have a transplant.  Needless to say a few days later she was in the hospital again. She did get out long enough to go to a baby shower for her cousins between 5 of her cousins she was getting six more cousins. She couldn’t wait for the babies. Over the next few months the babies started coming, and Sharee keep going to the hospitals! Finally in late June/ early July, Sharee’s Doctor’s at Emory called Andy and Sherry in for a meeting. They explain that in the past 6 weeks Sharee’s heart size had increased greatly and one of her valves was leaking badly. They would not be able to do the transplant Sharee’s body could not handle it. Sharee was dying. The doctor’s sent her home on hospice.
Sharee had heard this before, so she took it with a grain of salt. When a nurse ask her what she wanted to do before she died, she said, finish schooling at Eaast Central Tech, get a tattoo, and fly in a helicopter.
Needless to say, before she got home her Aunt Sylvia and Her Aunt Lisa got to work on making Sharee’s wishes come true.
The night Sharee arrived home I was in the hall when she walked in to the house. She looked dead. I had never seen her look that bad. I ran to her. We grabbed hold of each other. I do not know who held on tighter or longer. Then she said where is my mama.
She went to find her mama, to the bathroom; she took a shower, and went out with her boyfriend Eddie Taylor. Now that is an example of sheer strength, and determination: That was Sharee!
Over the next weeks family and friends were at the Holton house as much as possible. The members of Sandhill Baptist church that had always been such a source of support for, Andy, Sherryl, Sharee, Bobbie, and John Tyler, did not slow down, they provided food, comfort at every turn whatever was needed they provided. Like brother Stan Clough said at Sharee’s funeral, their yard looked like the Wal-Mart parking lot.
Benny Overstreet gave Sharee, Meagan Kirkland, and Rebecca Munford a night on the town in his Hummer Limo. Those girls had a Blast! They went to ” Tuesday’s” (Sharee’s name for Ruby Tuesdays) and ate supper, and rode around till they arrived home to a welcoming committee of family and friends. Benny had given Sharee a 2 caret sapphire, surround by diamonds ring. She was thrilled!
Megan took pictures, and Audrey Barnes held Sharee’s hand as she got her Tattoo. She chose the open heart designed by Jane Seymour. ( For Christmas, Sherryl received book and a framed picture of Sharee signed by Jane Seymour.)
Meagan spent almost every night with Sharee those last few weeks. Eddie, Brooke Lewis was there every second they could be… She had so many friends coming in the door just to be with her. The church had a sing for Sharee one Sunday night. I t was a last minute thing, but there was standing room only. Sharee set in a recliner they at the front of the church, as church members sang songs for her, and told her how much they loved her. She went to Sandhill since the day she was born. She was their baby too. Sharee got up one time and told everybody not to worry she knew where she was going!
She wanted her brother’s to go with her on her helicopter ride. Her Aunt Lisa captured it all on film for them. On that day they were such a happy family, but it would not last for long. Sharee was getting weaker by the day. During this period she had went back to Coffee Regional twice only to be told the last time, “Sharee we cannot do any thing for you here, there is no need to come back”.
Now one afternoon Sharee is feeling pretty good, and put’s in to drive to the store to get a drink. Her mama said,” You can go, but John Tyler is going with you.” Well, according to J.T. when they got to the store down the road she decided to go to Sonic. Quiet awhile later J.T. runs into the yard, yelling they had run into the ditch. Sharee was not hurt. She had turned on the Waycross Hyw instead of the New Forest, she was disoriented, and of course she would not listen to her little brother. She was stubborn that way. It took a while but they finally got on the Sandhill church road, when she ran off the road. Everyone ran to get her . It did not matter what her body was going through, Sharee’s soul was determined to live as long as she had a breath!

Two Fridays before her 22nd Birthday, they called the family in because they did not think she would make it through the night. In the wee hours she had her daddy carry her to the bathroom.
She made it through the night, and slowly came back to us.
Her cousin Wren flew in to see her. Wren , John Tyler, Meagan and Sharee celebrated their birthdays together on the Friday, before her birthday!  She said it made her sad on her birthday because of her Papa’s death on that date. So her Grandmother, Nana, Aunt Wendie and Liz made her a white dress to wear to her party, and just before she came out of her room, Eddie, Meagan, Brooke, Elizabeth, Bobby, kelly, Gracie, Andy and Sherryl went into the room with her. When they came out Sharee and Eddie were engaged. Sharee was in her dress, and she needed support to walk, but she was so happy. Everybody shared her happiness, but none of them could make her better!
The next Friday night was Sharee’s birthday. I had bought her a little birthday gift I was going to bring her, just thinking Lancelot and I would stay a little while, yet when I got there it slowly turned into another party.  Charlie’s mother, a friend of Sharee’s that had passed away had brought Sharee a shitzu puppy from Charlie’s puppy she had in the hospital with her, Aunt Liz had made a gorgeous Birthday cake that looked like a wedding cake. Both of Sharee’s Grandmother’s were there, as well as Sharee’s Aunt Sylvia, Aunt Lisa, Sabrina, and James Carver and their son, Brent. Andy and Larry Lewis were grilling. Uncle Leonard was there too. And of course Meagan stopped by she was going to home that night, but she decided to stay too. Eddie and Brooke were there, Bobbie was still recovering from his shoulder surgery, so he and Elizabeth were there. Linda Lewis was never far from Sherryl’s side.
I set with Sharee and her puppy Wallie for quiet awhile that afternoon. Sharee could hardly wake up on her to see her puppy. She did wake up and come to the table to eat. She sat up so straight, yet as she ate her eyes were closed. She loved her cake I could not help but think, that I was glad it was so like a wedding cake, because I knew she would not make it till her July 2011 wedding date.
Sherrly called Mama Monday morning, and said Sharee was not doing well, that we needed to go over. I had had been sick since Friday so I told mama I would get ready and meet her there. She called me and said to bring Sharee some yogurt. I had stopped at one store, and was heading to another when Mama called, and Said Sharee was gone.
On August 10, 2009 Sharee went to see her Papa. We her family and friends grieve for her even though we know she is with her lord and Savior Jesus Christ.

 

Sunday, June 10, 2007
The world is a scary place. People can be crazy, and life is not easy and no way is it fair.
So everyday that you have here with your friends and family…
Make the most of it. U never know what can happen or who you could lose.
So live life to the fullest, be thankful, party like there’s no tomorrow.
Love always…
Xoxo
Sharee Holton
(Taken from Sharee’s myspace)
My name is Laken Sharee.I live in Douglas,GA. I love to have fun with my friends and family they mean the world to me and they are the greatest! My daddy and momma are CRAZY but I love them so much. My momma is the best, everyone says we are so much alkie its scary at times. I have two brothers, Bobby and John Tyler, there a little annoying but I’lL fight for em anyday, anytime… lol. Bobby graduated last May and I’m so proud of him. He started college at south georgia and it still working very hard to get to this goal,and John Tyler goes to Coffee Middle School. I have a god-daughter, Kaci Jean, shes 4 and I love her to death, I also have a god-sonn raymond (ramey) lol i love both of them very much. I’m a christian. I go to Sandhill Baptist Church, we have awana class on Sunday at 5 and I help teach the cubbies class(3 and 4 yr olds). It’s great there so cute and funny. I’m still in school at ECTC and I’m almost finished, but Im really a simple down home country girl. I like fishin, huntin, ridin 4 wheelers, and havin fun on the weekends and spending time with my family! Welp anything other then that just ask and I’ll tell u anything u want to know … but dont ask to much lol!

Lancelot’s Quest – The 1st 2 years

Living in Kairos: God’s Time
March 1994: After Lancelot’s first Heart catheterization,  Dr. Marvin told me that Lancelot’s vascular disease was so sever, that no one
could help him.
That was over 17 years ago!

DEATH MAY BE A BREATH AWAY, BUT GOD HAS BLESSED US WITH THIS MOMENT TO LIVE!
Lancelot was born September 4, 1992                            .
I was told I had a Healthy baby boy.
Three doctors checked him out in the hospital.
Not one of those 3 doctors mentioned a heart murmur.
But this was all of God’s planning; his timing is always perfect.

Lancelot with his Granny Douglas

 

Lancelot was 3 weeks and 1 day old, when I said to Mama,
“All the books say if a baby is going to have the colic that it will begin
before they are 3 weeks old, so he does not have the colic.”
That night the screaming began… note I said, that the books said it would start before 3 weeks.
For the next 5 months, I took Lancelot to the pediatrician over and over, only to be told,” There is nothing wrong with his heart, his lungs, his liver, all his major organs are fine. He just as the colic.”
One good thing about his first Pediatrician, at Lancelot’s 3 month check up, he turned to me and ask,” Did he just say Mama?”. I said,” Yes you should have heard him last night!”

 

Lancelot’s screaming was a 24/7 occurrence.
When he was almost 6 months old, he slept 2 hours straight.
That was the longest he had ever slept. When he woke up, he coughed two little coughs.
I told Mama, that I better take him to the doctor he must be sick.
His regular pediatrician was not in the office. I took him to see the Doctor on call.
Dr. Kruppa, took one look at Lancelot, and said all this is his first visit to the doctor.
I told her,” No malm he is almost 6 months old.” She turned, and began listening to Lancelot’s chest.
She turned back to me and said,” This baby has a loud Heart Murmur!”
He also had an ear infection, throat infection, upper respiratory infection, and bronchitis; this was just the beginning of countless infections. She made him an appointment with a cardiologist, set him up on meds, and put him on baby food. Needless to say Lancelot had a new pediatrician.

The cardiologist in Savannh saw Lancelot between 4 and 6 times.
He did echoes and all the basic test. He noted Lancelot’s small size, and that his blood pressure was high.
He said that as long as he was eating at least 2 ounces every 2 hours, he was o.k.  I said he ate at least 8 ounces every two hours, and I had begun feeding him baby food too. He said, “That’s good”. He said his blood pressure was high because he did not like doctors.
He diagnosed Lancelot with mild pulmonary stenosis nothing to worry about…

 

Lancelot went to the Heath Department to get his immunizations.
On his 7th or 8th month visit, when the nurse pricked his finger, he bled all over both of us.
She told me to make sure I told the Doctor, next time went for a visit.
I did not think that much of it. Lancelot had double his weight and was talking; he was doing great except his infections, and the screaming. So the next time we were at Dr. Kruppa’s office, I almost forgot to tell her.
When I did, she said probably is nothing, but I will set him up an appointment at Nemors Children’s Clinic with a Hematologist.

At 8 months Dr. Bridgett Freeman came into Lancelot’s life.
When she walked into the room, I thought she was another nurse.
She handed me a scratch piece of paper with some numbers on it.
I just looked at it, and looked back at her. She told me this was his blood pressure, and it was why too high.
I said, “Oh he has mild pulmonary stenosis, nothing to worry about!” She said there is more going on that to cause such high blood pressure.

After we left Dr. Freeman’s office we went to the 9th floor for Labs. First that stuck him in one arm, then the other, then they went back to his other wrist, then back to the other wrist and then they tried both feet. When they started with his arms again, I started blacking out! I was the kind of person that walked into a Dr.’s office and got sick. On the way home, as Lancelot laid passed out (sleeping) I had a talk with God. If Lancelot was going to have to get this kind of blood work and testing regularly; I needed his help to be there for my son. I could not be sick or scared when my baby needed me. As always God is good, and he gave me the strength I needed. Over the next year throughout it all I never got light-headed again, and I never cried. I never ask why… if it could happen to other people, why would it not happen to my son and me.
With in a few weeks we had Lancelot’s second diagnosis, Von Willebrand II B.
Von Willebrands is a bleeding disease that has 4 types: I, II A, II B, and III.
Lancelot had to be treated like a hemophiliac patient, because he could have a major bleed at any time. He had a helmet, elbow, knee pads, and his living environment had to be safe. No football for this Georgia boy!  Lancelot was acquired, meaning no family member had this disease.

From 8 months to 14 1/2 months, we kept the road from Blackshear to Jacksonville hot. Lancelot was the last outpatient at 5 North, Baptist medical, and the first outpatient at Wolfson Children’s Hospital, Baptist medical.
Lancelot screamed through it all! He also was either constipated or had diarrhea. The first time he was an out-patient at 5 North, the nurse called to explain what to expect the next day. I attempted to return the favor by explaining Lancelot’s screaming. She said, “Honey I have been a pediatric nurse for over 15 years. I have seen it all.” The next day it took over 3 hours to get the IV started, and 3 doses of cloral hydrate to get him a sleep. And of course he wake up during the MRI. At the end of the day, the nurse said to me, I am so sorry. Her hands were shaking, she continued, “I had no ideal, I have never been around a child like Lancelot.” No one had, but Jesus just carried me through, and I walked around with love carrying my baby. (Years later Lancelot was having another test, and two nurses were trying to start his IV, finally Lancelot had enough and bit one of them. She said,” Lets get another nurse”. When the other nurse left to get the new nurse, the other one told me, that they call her one stick. Guess who walked in…, the nurse from Lancelot’s first outpatient test. She said after working with Lancelot the first time she decided she needed to practice, so that no other baby would have to go through that again!) God makes all things work to his good!

November 1993, it was just another outpatient test at Wolfson. By this time Lancelot had seen so many Dr.’s and been through so many tests, that this was a normal day for us. The radiologists walked into the waiting and room, handing out a sticker to each of the children, when he handed me Lancelot’s sticker, he handed me about 20 stickers. I knew something was wrong. Lancelot was a baby, so why would he give me so many stickers. He told me to take Lancelot over to Dr. Toylamat’s office. I said, they’ll call me with the results; it is late and they will be closing soon. He said, “No, you have to go now!” At Dr. Toylamat’s office, he told that Lancelot had a tumor on his adrenal gland. He had Dr. Freeman to come in to explain our next step. This of course would be another set of test. It was two weeks, and after I had driven Mrs. Kathy (Dr. Freeman’s Nurse) crazy with phone calls, before we were at Wolfson for Lancelot’s testing. Lancelot of course was his usual screaming self, and woke up in the MRI.  During the bone scan, I noticed what I hoped was the board on Lancelot’s arm. I ask the technician, and she told me that Lancelot had his arm over his head, and that was the tumor.
That night at the hotel, Lancelot and Mama slept, and I watched T.V. There was a story about a little boy with cancer. He had been in the hospital 6 months, and he had a beautiful smile on his face. I started crying and prayed Lord please take my son. He hates hospitals; he would not be able to survive a long stay in one. The next morning, they could not find Lancelot’s tumor on any of the test. He had another test to make sure, but the tumor was gone!
God is so GOOD!

 

In December 1993 Lancelot’s blood pressure was 250/200, I told Dr. Freeman to go ahead and set Lancelot up for an appointment with University of Florida Pediatric Cardiology. In January 1994, Dr. Bain stood by Lancelot’s bed, as a sedated echo on him. Of course it took a lot of medicine to get Lancelot out, and he kept moving and trying to wake up. Dr. Bain said Lancelot had pulmonary stenosis, but it was not mild and he thought he had something on the other side; he had a grade 4 heart murmur. He referred Lancelot to Dr. Marvin for a heart catheterization.

I checked Lancelot into University hospital in March for a three-day stay. That night Dr. Bill Marvin came into the room to check Lancelot. Of course I was reading him a book (Probably the Foot Book), Lancelot came into this world a bookworm. He asks me and Mama to come with him, and the nurses would look after Lancelot. As soon as the nurses came near my angel boy, he started screaming he said, not to worry they were professionals, and Lancelot would be OK. Famous last words! We walked down the hall into a room so that Dr. Marvin could explain the procedure. Even with the door closed you could hear Lancelot screaming, finally Dr. Marvin said just a minute, and he came back into the room. Lancelot had already stopped crying. Dr. Marvin said he had 5 children, and did not hand Lancelot back to me! Dr. Marvin said, the test should only last an hour and a half, and he did not expect to find much, because Lancelot was such a handsome, healthy boy.

The next morning Lancelot went into the Cath Lab, and I started to watch the clock.
An hour and a half went by, and then another hour, the wait was endless. Then they brought Lancelot in with Dr. Marvin close behind. He was not making eye contact with me. I knew something was wrong. I started asking  does he have coarctation of the aorta, because some children that have this have acquired bleeding disorders.
He said we had some complications, and I want to talk to a friend of mine about our options, then we can talk or I can tell you my findings now. Before I could say anything Mama said ” we will wait.” That’s all Dr. Marvin needed to hear. He said o.k. and walked out the door. I was like, why did you say that? I am his mother, and I have waited long enough… I want to know what is wrong with my son now! She said, well go tell him. I ran out the door, and found Dr. Marvin. He kindly came back into the room, and began telling us about the procedure and his findings…Our Life as I had dreamed it was truly over!

At the beginning it did not go well, Dr. Marvin could not get the cath to go in, and then once the cath was in Lancelot’s BP skyrocketed and the pressures in his heart was so forceful , his heart was about to exploded.
Dr. Marvin had to put a whole in Lancelot’s heart to relieve the pressure. My baby now had a whole in his heart.
Then came the bad news, Lancelot had sever peripheral pulmonary stenosis, his whole aorta had stenosis, and Dr. Marvin said he thought that all Lancelot’s arteries and blood vessels with stenosis. He said Lancelot could die at any moment, and that there was nothing anyone could do for him, but he was going to call Dr. Locke at Boston’s Children’s Hospital and see if he could buy Lancelot some time. I ask do I need to learn CPR (My bother and sister-in-law had to learn this when my niece, Sharee, was diagnose with sever heart disease. Sharee died August 10, 2009. See an article on Sharee in my Quest)
Dr. Marvin said, “No, you will be watching him and turn around, and he will be dead, no one or nothing could save him. His heart is enlarging, and it will burst.” But if Dr. Locke can help get Lancelot more time, changes are taking place everyday in medicine, and maybe one day someone will come up with something to help Lancelot.

Later that day, Dr. Freeman came across town to discuss Dr. Marvin’s findings and to make sure Lancelot was receiving his factor meds and did not have a bleed She had become more like family than a doctor. She assured me if there was anything anyone could do Dr. Marvin would find it.  After she left Dr, Marvin came back and took me to his office at the cath lab. (Mama stayed with Lancelot who was jumping in his bed, Dr. Marvin had just shaken his head. As anyone knows you are not supposed to move around much for 3 days when you have a Heart catheterization.  But Lancelot jumped all the time, he had such big muscles in his booty and legs, which I use to fear breaking his legs when I changed his diapers.) Dr. Marvin showed me Lancelot’s pictures taken in the cath as he explained Lancelot’s condition. He said, that Dr. Locke thought he could stretch Lancelot’s Pulmonary arteries and blood vessels. Lancelot would have to get this done every 3 to 6 months to live, and he needed to have his Aorta fixed before he was 5 years old.

 

Boston! Thanks to Dr. Freeman and Ms. Kathy, Lancelot, Mama, and I headed to Boston, Mass. on Memorial Day weekend 1994. During the flight, I read the Foot Book over and over again. I took him into the small bathroom and laid him in my lap to change his diaper, and as usual he screamed bloody murder the whole time. I opened the door, and every other passengers head turned, and looked at me like I was the carrying the poster child for child abuse and I was the abuser! I just carried my smiling child to my seat, and began reading the Foot book to him again. I was so glad to get to Boston. They had set it up for us to stay in a family home. The next day Lancelot went into Boston’s Children’s Hospital. There was the usual variety of test Followed by every Specialist in the hospital stopping by Lancelot’s room, to use him as a teaching aid for students. . By the next morning Lancelot was in Hospital Shut-down; he had a blank look, and he was not reacting to anything.( No screaming or biting) When he went down to have his Lung Scan, he laid perfectly still. I was rocking him when we got back to the room, and begging him to come back and fight, when his nurse walked into the room, and Lancelot let out a scream like only he could do… Music to his Mama’s ears!

In a few moments we headed down to the Cath Lab. The nurse turned to me and, said this is as far as you can go. My heart broke, knowing that this could be the last time I saw my baby alive. It took all my strength to walk away from Lancelot. It was not long before I heard that Screaming that I knew so well coming from the CICU! I did not stop at GO; I ran into the unit to see my baby.

 

August 1994, about 2 weeks before Lancelot’s 2nd Birthday, we were back at Boston’s Children’s Hospital.
Lancelot was having his second set of dilatations on his Pulmonary arteries and blood vessels, when I felt my heart being pulled from my body. I knew Lancelot was dying. I started pleading with God to let me have at least six months or a year more with my baby. He had just started having some good days. I screamed please let me show him some of the beauty and good things in this world before you take him! (I was in a large group of people who did not hear me or see any change in my behavior.) I hear a still quiet voice say it will be hard. I exclaimed, “I do not care; I just want my baby”! I ran into the hospital, up the stairs, onto the elevator, and meeting Dr. Locke in the hall way. he said, ” I know you think I do not care about these children, but I do. (Long story!) We lost him.  It took us between 6 and 8 minutes, but we got him back!”

This time when I went into CICU to see my Gorgeous, Little Superman, he was not jumping up and down…he was laying flat out on a bed with tourniquets on three of his limbs, and he was on life support. I watched as tears were seeping out of his eyes that were swollen shut. I stood by his bed and read the footbook.  I had been standing there a while, when I started blacking out. Lancelot’s nurse, suggested I leave, and get a glass of wine with some food. She promised she would not leave his side so I finally agreed.

Lancelot had went into sudden pulmonary edema. His little heart was working hard to rid his body of all those fluids. When we got to our room, I called to check on Lancelot, and I heard a familliar screaming. I hung up the phone, and went back to CICU. I remember reading, singinging kinda, but a lot of it is a blur all that matters is he came home with me.

That was over 17 years ago! In October 1994, the results from Lancelot’s Elastin test came back.
Lancelot’s geneticist called me to let me know that Lancelot had William’s Syndrome. I hung up the phone, and fell to my knees, crying I am so sorry, so sorry Lancelot; I selfishly begged for your life, but what kind of life are you going to have? (William’s Syndrome, symptom’s include retardation and many more) I learned also from Dr. Marvin that nothing other medically that could be done for Lancelot.

Lancelot had no Hope in man. God used my son to teach me how each life is a Miracle, that God loves us more than we can imagine, and if we give our Quest of Heart to God, he will give us a life beyond our Hopes.

 

 

Renee aka Lancelot’s Mom

Renee’s Heart

 

(Lancelot and I had a blast at the 1993
Okeefenokee Agricultural Fair.  When My
13 month old baby boy was having a good day, his mama had a great day. I had
accepted the fact that Lancelot had a bleeding disorder and high blood
pressure.  His screaming still happened
frequently, but not every day…Life was getting better!)

(My Knight-n-Shining Armor) My Quest in life has been to be a
writer. I have always been an avid reader.

(Note do not read to your child in the womb, or you will be reading to them for
the rest of your life.) I kept praying to God to give me a story that would help
someone else…
(Insert
pic- Book and Lancelot img_0003)

He
gave me Lancelot. On Lancelot’s Quest of Heart, I see how his story touches
other lives; I learn other people’s stories that touch my heart.

 


So
God has given me stories that can inspire other people on their Quest of Heart.

The
second part of my Quest is to keep Lancelot’s Heart happy and healthy. Dr.
Freeman always said that I centered my life on Lancelot, and that I needed to
have something for myself. Yet she did not know how hard his little life was,
nor actually do I; I was just a witness. I was blessed to see his life blossom.
He taught me so much about life and dairy farms. Once he was able to travel, he
has leaded me to so many fascinating people and places.

John 3:16

For
God so loved the world,

That
he gave his only begotten son, so that whosoever

Believeth
on him shall not perish, but have everlasting life.

I
would do anything to keep Lancelot’s Quest going forever!
( Click on Notes from the Past to
see some Diary excerpts to see my progress in the early years.)

When
I was told Lancelot could die at any moment, I knew how much God must love us
to give his son for our eternal life because I would go to the ends of the
earth to save Lancelot.

I
wish I could have had somewhere I could go when Lancelot was young, to find out
about other children, their parents, and programs that would open doors, so
that is my Quest.

John 9: 1-3 (NIV)

As he went
along, he saw a man
blind from
birth. His disciples asked
him, “ Rabbi,
who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of
God might be displayed in his life.

John 9: 4-5 (NIV)

As long as it
is day, we must do the work of him who has sent me. Night is coming, when no
one can work.

While I am in
the world, I am the light of the world.”

 

The Quest Begins!

Every breath, of everyday is a gift from God!

When my son Lancelot was 18 months old, I was told that he could die at any moment. Since then we have been on a Quest of Heart. No one could save him, but I could not give up. I was his mother and he was my Angel boy.

 

Together we got through the moments that turned into days, which turned into years. Each day has been a blessing. Granted, many of those days were mixed blessings, but each day was a gift to be cherished.

 

My son Lance in the woods

 

Today Lancelot is 18 (almost 19!)  He is on a Quest to see Dairy Farms, Trains, Draft Horses, Peacocks, and all of God’s Creatures all over this world! I told him the only thing I could… “If God lets us!”

 

Our goal here at Quest of Heart is to aid everyone else on their own quests. That is quite a big dream, but through God’s love we can all learn from each other’s weakness, and help each other with our strengths!  We are going to start off by providing resources and social outlets for children and teenagers in the United States and abroad with chronic medical problems.   Having to watch several close family members deal with being given a terminal diagnosis’ at birth has led to the realization that even with all the friends and family support you can provide they can still feel alone and different.  Our goal is to try to link these  children to others with similar situations and burdens.  At the same time we are also going to provide information and support to parents, as well as other family members.

 

We are also going to start visiting hospitals and cardiologist offices to deliver customized hospital and home-bound survivor kits to teenagers and young adults. Inside these kits will be a collection of things we have found to be helpful over my family’s many hospital stays.   It will include things like necessity items, activity books, and support information for all family members.

 

We know that if God lets us, we can make a difference in the lives of young people.