My son has the Di Geroge Syndrome since he was born

Didn’t know if you wouldl like to chat about the Di George Syndrome our children have would like to know about it more.

Certainly, I am more than willing to chat with you. How old are your kids? Do they both have it? How are they affected?

We live in Vancouver, BC, Canada. My son is now 10. Very abbreviated version of his life to date is: born 2 months preemie at 3 1/2 pounds, with Tetralogy of Fallot, one kidney, and eventually found out, no thymus gland. He had heart surgery at 8 months, had lung complications, and spent 5 weeks in the hospital. Got home for 3 days (we lived 6 hours away from the children’s hospital), and he got really sick - a really bad lung virus. He was put into a drug-induced coma, on a respirator for 3 weeks. He was very determined to live.

That determination saved him, but man, sometimes it really gets in the way of a peaceful house. He can be obsessive about things, and has very strong emotions, and difficulty expressing himself. I have had to be strict, use reward systems, all the techniques that you see on the “Nanny 911” shows…but his joy and love is also very strong. The consistency is paying off now, and as he gets older and learns that negotiating is allowed, but tantrums are not.

He used sign language to communicate until he was 4 1/2 - and had been having speech therapy since 18 months old. He is now a very talkative child - no, really really talkative. He is very social with all ages, but gravitates towards adults at first meeting. Stranger danger was a huge concern for many years with him. He is more aware now.

Anyway, let me know about you…

He has an aid at school, and though delayed, he is learning. It just takes him a alittle longer than other kids.