Nicholas Carter Leonetti was born on October 7, 1986 at 37 weeks by C-section. He
weighed in at 8lb.13oz. and his apgar scores were 8 and 9.
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Nicholas Pictured with Dad
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At 2 months Nicholas needed hernia surgery and at 3 months he developed a pericardial
effusion. It was tapped but reaccumulated immediately and at 4 months he had a pericardial
window.
Nicholas was floppy and physically behind but the doctors said it was because of having
3 surgeries in his first 4 months. But by 7 months we knew things weren’t right and they
were now calling him “failure-to-thrive”. At this time we began an infant stimulation class
(two times a week till he was 3 years).
At 10 months Nicholas was tested for hypothyroidism and he was put on synthroid immediately.
When Nicholas was a year old we decided to give him a gastrostomy tube for night time
feedings (additional calories). He was big at birth yet only weighed 14lbs at 12 months. I
nursed Nicko exclusively because he wasn’t into food and eating (never his favorite subject)
and he breast fed well but his slow weight gain was a mystery.
The day after g-tube surgery Nicholas went into DIC (disseminated intravascular coagulation)
which is abnormal coagulation that results in life threatening bleeding. In his 9 years Nicko
went into DIC 8 or 9 times and had over 250 blood transfusions in his lifetime!
Over the next few years Nicholas had 2 different strabismus surgeries, 2 different muscle
biopsys and a liver biopsy. All these showed extra lipids (fats) and extra fluid. But no explanations.
Nicholas never had the doughy skin or the fat pads so many others with CDGS have but every
thing he did have fit the syndrome to a “T”.
Our precious little cutie pie entered school at 3 in a fairly high functioning yet physically challenged classroom.
He had a wonderful teacher and love abounded in this and all the
classes he would ever enter. At 3 Nicko could not sit, bear weight, or crawl but he could roll
over. He was able to be propped in a high chair, strapped in with sides and a tray and the back
was higher than his head. This sitting position helped with his head control. Nicholas knew
everything and everyone around him, he had 8-10 words and could point to any object or person
we named. When asked how old he was Nicholas could hold up fingers.
When Nicholas was 3 1/2 we heard of a school in Bakersfield (1 1/2 hours north of LA) and
was a functional program that taught severely handicapped children to sit, stand and walk. Within
3 weeks I moved up to Bakersfield and rented a furnished apartment. We would stay in M-F
and we returned home on weekends to be with my husband.
The M.O.V.E. program (mobility opportunities via education) was a god-send to our family.
In just 10 short months Nicholas was sitting unsupported in a chair with no arms for up to 2 hours,
he could bear 100% of his own weight for 5 minutes or more, and he could walk while being assisted with
1 hand held for many steps (10-20 or more). He learned how to ride a grocery
cart and to deal with turns and movement without falling. All during this time Nicholas loved to
swim (wearing a Steins floatation jacket made for water-skiers that had a collar on it for head
support). He would float on the water, unassisted, and kick his legs, splash his arms and squeal
with delight. Swimming was Nicholas’ favorite activity. He also road horses, therapeutic riding
for the handicapped, once a week from the time he was 2 1/2.
After 10 months in the M.O.V.E. program we felt he had made remarkable progress and decided to
move home for good. All the while we were in Bakersfield we were working on bringing
the program to Los Angeles Unified School District (the 2nd largest in the U.S.). Educators at
home heard of Nick’s progress and came to see him. They were shocked and delighted with his
progress and the M.O.V.E. program was adopted very fast - every special ed school in just 2 months!
We were home just 2 1/2 weeks and Nicholas had his first seizure. It was a gran-mal seizure that put him in a coma.
This was Nicks “stroke-like” episode and hospitalized him for 8 weeks.
Nicholas lost everything. His speech, all he had learned with M.O.V.E., the ability to eat, but
most of all his personality. Nick’s nic-name was Mr. Personality and this was our greatest loss.
The hugs and kisses were gone, the wonderful smiles were gone (but glad to report they returned)
and our little angel as we knew him was gone.
Nicholas lived from age 4 1/2 to 9 and had several more life-threatening episodes and hospitalizations (16 in all).
He had startle seizures and was on seizure medication daily.
Because he was once again non-ambulatory his respiratory system was compromised and he
developed sinus infections easily, and he died of pneumonia. After a lot of hard work, on Nicho’s
part, his great teachers part, and our part, he was able to smile alot, sit while strapped in a very
supported, and even bear a little weight (for his teacher not for us).
Our proudest day came when Nicholas was 8 years old and was the ring bearer at his teachers
wedding. With his tuxedo and blow dried hair he looked to us like a handsome teenager. The
best man wheeled him down the aisle (not a dry eye in the church) and the second dance was in
his teachers arms. It is a day I will treasure always and never forget. He was the happiest I had
seen him since the coma. This is how I choose to remember him.
When Nicholas was 5 we adopted his little brother Alexander at birth (after years of infertility).
I became pregnant, despite the infertility doctors, and we were delighted to find out we’d finally
have a little girl, just 8 months younger than Alexander. Our daughter Rebecca died at 36 weeks
gestation and the autopsy revealed nothing. We did know that she had fluid in her scalp and chest
and her movements in-utero weren’t fluid or normal appearing our perinatologist had said. We
now believe Rebecca also had CDGS as it doesn’t take a rocket scientist to figure it out.
We have since adopted Katherine, now age 2, and our family is complete. My husband and I
turned 40 this year and our 4 1/2 year old and especially our 2 year old are running us ragged.
We spent a lot of money getting our family (2 adoptions and 3 failed attempts at egg donor IVF)
but we know, as you do also, they are worth every penny.
We wish you all the best with your families and for those of you that are currently dealing with
CDGS we want you to know that Nicholas did sit, he did stand, and he did walk and it changed
our lives tremendously. We are forever grateful to all his teachers and especially the M.O.V.E.
Program.
eff: 1997