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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  Nathan Alexander Prante-Price
CS Type 2
Weight: 27 lbs
Height: 31 inches
Food Volume: 300 mls of 45 calorie / day

Nathan was born January 26, 2005. We first found out he was having problems at 2 months old due to failure-to-thrive and microcephaly. He spent 10 days in the hospital. He failed his swallow study at that time and started being NG tube fed for about a year. He had a CAT scan and it showed an under developed brain in the cerebellum and corpus callosum. The cerebral cortex was also not well organized. He had kidney reflux level 3 and normal reflux.
He was diagnosed with CS at age 4 ˝ years. Nathan is a great little boy with a very social personality.
He loves to give lots of hugs and kisses, but be careful as some kisses turn into bites. He comes with many accessories: hearing aids, glasses, DAFOs, a mickey button, an eye patch, hand splints, and a binky.

He does not eat my mouth at all, nor does he walk or talk. We used to work on his feeding all the time until we found out his diagnosis. He can walk using his walker. He loves to walk to the TV.

He has had 4 surgeries. One to get his mickey button placed, and 3 for his eyes. In the surgeries for his eyes, it was to get his eye lashes out of his eyes. He did not have cateracts like many CS children.

Nathan has many favorite toys, balloons, a plastic red fire engine, books and a musical Fisher Price toy. He also loves animals, water and bubbles. He will play on his own for about 15 minutes, but really wants 100% attention all the time. Nathan also loves Signing Time and Baby Einstein videos. He also loves his sister very much and loves to pull her hair and annoy her.

He loves school, and gets excited when the school bus comes to pick him up. He attends school every day. Nathan has physical therapy once a week and occupational therapy twice a month.

Nathan was fortunate to have a wish granted in his honor through Make-A-Wish Mid Atlantic. We all went to Give Kids the World in Florida on his birthday in 2010 and had a great time. Nathan knew very well it was a special trip in his honor.

More recently Nathan has lost his 2 front bottom teeth, and about a month ago we got a fish. His daily job is to feed the fish every morning. Nathan is currently doing well health wise, but we always worry about him. We love him.

   
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