Noonan Syndrome (NS)
Support Group Introductions

Grundy, Sherry (as at 3/99)

Hi everyone I’ve been reading mail and chatting back a few times. My name is Sherry, and Cody is 8yrs.old and has NS. Cody was born 2 ½ months early and only weighted 2lbs 10oz. He has very small. He had a lot of problems so we were lucky to have so many doctors looking after Cody. He wasn’t diagnose until he was 2 months old w/ NS and the doctor was everything would be fine and don’t worry about. I didn’t have much information to go on. Cody was in and out of the hospital every month for the 1st yr. At 18 months he had Balloon Valvuloplasty done. It worked well but his artery back to where it was before surgery. His Heart Dr watches him every 3 months.

Cody also has the bleeding disorder. He has antibodies platelet disorder and the von Willebrand disease and thrombocytopenia. Cody always has bruises, he’s not aloud to play any contract sports. Hard for a little boy.

Cody had to have both testes lower. His were up so far that they had to cut his stomach to get them out. He hated that because he was 3 and 3 ½ years old. Potty training came very late. He still has problems with wetting. He has a tear in his bladder wall and has very hard bowel movements.

He had a hemangioma (tumor w/ blood vessels gather around it) had removed at age of 5. He has a thyroid problem that only acts up once in a while.

Cody has ADHD and is on Ritalin for that. He’s short for his age, Most kids that are 5 years old are taller then him. He only weights 50 lb.. He’s in special classes at school for learning disabilities. Cody wears glasses. His teeth are bad the enamel isn’t good.

I think that is all. If I can remember anything else I will email. Cody is my special little boy. The doctors say that Cody should even be alive today (he had a cat scan and all of this central nerves brain cells were dead. 3 weeks later they were all back to normal and they say that is impossible) He our Miracle Boy there is a reason for him. He makes people around him take notice. And he’s very outspoken like his mom.

Sorry so long. I love this foundation there is so much information. I want to get Cody’s picture to the star gallery.

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