Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

 

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  Jesse was born Nov. 8, 1990.

He weighed 6 pounds 11 1/2 ounces. He had head full of long red hair. Although I did not know until he was around 3 1/2 months old, Jesse was born with cataracts on both eyes. When Jesse went to his 3 month check up at the Health Department, the doctor told me he had something wrong with his eyes and he wanted me to go see a specialist. The specialist ended up being Dr. Thadeus Kelly, the head of the Genetics Department at the University of Virginia (he is the same doctor who diagnosed Candice Wall--he had diagnosed her about 6 weeks earlier). Dr. Kelly asked that we come stay at Kluges in Charlottesville Virginia. During a week long stay there, Dr. Kelly arranged for multiple testing to be done.
Dr. Kelly let me know during that week what he thought Jesse had. So he was officially diagnosed at age 3 months old, which is so unusual because most of the children tend to be much older.
While most CS Type 2 children don't start dropping off the growth charts until about 1 year of age, Jesse started dropping off around three months of age.

When Jesse was about 18 months old, he weighed around 12 pounds and it was taking me a 24 hour period just to get 12 ounces of formula in him. The doctors, nutritionist and I started discussing a feeding tube. We did try a NG tube for about a month before with went with the G-tube and Nissin wrap. Within a year, Jesse had to be put on a "diet" because he was too "fat".
Jesse never learned to crawl, walk or talk but he knew how to make his needs known. He was an extremely happy baby who enjoyed being held. During the four years of Jesse's life, he touched many peoples lives. He taught me so much and no matter how hard it has been to lose a child, I would never trade those four wonderful years for nothing.

   
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