My daughter has partial degeorge syndrome she now 13. This i know is rare. If anyone has a child who has it i would love to hear from them.

WPLbill

My son is 14 and he has degeorge syndrome, he has had 4 heart surgeries, speech classes, cleft pallet operation, & has immune problems. He has terrible head aches from his blood pressure. This year we put him in special classes to get extra help in school (A's this year). We hope to get his learners permit soon. He understands things differently than most people. He has very few friends and looks down when someone talks to him. He has the turned ear with a bald spot over the ear. He can't blow his nose & snores. He does not show emotion much. We hope he will go to college. my email is

corriehac

Its been good to hear from other people with cheyennes problem. cheyenne is now 14. she still does not have many friends. our email address is

Tinabear35

I have a grandson who will turn 5 in a couple of months. As we talk the Doctors are wanting to open his pallet for better speech, has anyone had this done? and will it help him speak better? Also what is partial degeorge?

WPLbill

Yes, my son had cleft pallet surgery, they had to move part of the inside of his mouth over to another part. He really needs another surgery to repair some more but we have decided to wait. He talks through his nose and tried to play the trumpet (he couldn't). He had speech lessons but stopped because he can not change any more until he gets more surgery.

corriehac

my daughter cheyenne had surgery at 5, she was in the hospital for 2 weeks she refused to eat, because it was so scary for her. she still talks threw her nose a little, but is a lot better than it was. I wish in away i would have waited till she was older and could understand a little more. she still takes speech till this day.

TABBYSDAD

were not sure would like to talk more ,does you child have any heart conditions

AWC59

Hi,

This is a wonderful place I have found. My son was diagnosed at age 10. He had open heart at 12 wks, with complications. He is 17 now and going to be a senior in high school. Elementary & jr. high he did with TSS workers, high school on his own. GPA this year 2.88 taking mostly regular classes. His permit is about a year old now, but we are working on it.

Did a college tour last night near home. He will go, maybe with some help.

Please don't let anyone tell you what your child cannot do, we have fought the doctors, the school and I am sure there will be more. Our children are fine, they just see the world differently and learn in their own way. The funny part, our son has total recall of conversations, events that have happened years ago........very freaky sometimes.