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corriehac · Dec 29, 2006, 10:38 PM

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.

Dian1122 · Mar 2, 2007, 08:21 AM

Originally Posted by corriehac

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.

I have a daughter also who was diagnosed with partial degeorge syndrome shortly after birth. She is 5 yrs. Old. My email is [email protected]

bridie butts · Apr 4, 2007, 05:58 AM

Originally Posted by corriehac

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.

Hi my son is 12 he also has this syndrome he has problems with speech is deaf in his left ear has had heart surgery but he is very good about it all excepting he is a bit different to his siblings & peers I live in Wales & am yet to meet anyone with this condition would relly love to chat

Missy2008 · Jan 26, 2008, 08:01 PM

My Bestfriend's brother was born with it and he's almost 21 years old. I've known him since he was 4 years old, he's like a brother to me. What questions do u have?

bridie butts · Jan 27, 2008, 04:51 PM

Hi I'd just love to know how he is is he well and is he very sociable and does he encounter many problems having this condition

jokrista · Feb 6, 2008, 10:01 AM

:)

Originally Posted by bridie butts

Hi my son is 12 he also has this syndrome he has problems with speech is deaf in his left ear has had heart surgery but he is very good about it all excepting he is a bit different to his siblings & peers I live in Wales & am yet to meet anyone with this condition would relly love to chat

jokrista · Feb 6, 2008, 10:12 AM

Hello,
My name is Lee I have a daugther that has De George , she is 22yrs great from high school, in 2005, she drives a car I was told that she would never be able to drive a car, or do anything with her life. She is going to start collage in the summer, she wants to be a chef that's what she is in scoool for. She has had open heart surg when she was 8 months old. She does have a speech problem, it's hard for to pronce the letter [r], and when gets excited about something and tals to fast I have to tell her to slow down. She can progem a computer. Make her own web site. We are very proud of her, When the doctors, tell that your son or dauhther can't do anything because of this , tell them about my child.
Please feel free to write me back.

jokrista · Feb 6, 2008, 10:13 AM

How many children have De George ?

corriehac · Mar 4, 2008, 10:14 AM

Cheyenne is doing fine. She is now 14, wow! My email is [email protected]. Cheynne this year had one problem with an infected tooth, that she had to stay in the hospital. It is so nice to hear from so many.

zookeeper · Mar 15, 2008, 06:55 PM

Hello I have a seven year old with partial degeorge. After genetic testing we discovered my husband also has it

WPLbill · May 7, 2008, 07:40 PM

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 [email protected]

corriehac · May 8, 2008, 09:10 AM

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 [email protected]

Tinabear35 · May 28, 2008, 03:04 PM

Originally Posted by Dian1122

I have a daughter also who was diagnosed with partial degeorge syndrome shortly after birth. She is 5 yrs. old. My email is [email protected]

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 · May 28, 2008, 05:09 PM

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 · May 29, 2008, 02:16 AM

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 · May 29, 2008, 10:08 AM

Originally Posted by corriehac

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.

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

AWC59 · Jul 17, 2008, 07:28 PM

Hi,

This is a wonderful place I have found. My son was diagnosed at age 10. He had open heart at 12 weeks, 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.

Redhrdqt · Aug 10, 2008, 10:24 PM

Hello. My son was diagnosed with DeGeorge in May, 2008. He has survived two open heart surgeries. If you want to visit, my email is [email protected]

loubie76 · Aug 14, 2008, 12:10 PM

Hi my son is 2 and a half and has degeorge syndrome, in the process of finding out about him I have it too, Which I see as a good omen, I've been to college and got a diploma as well as working as a nursery nurse, So I know he might struggle for awhile but he will get there in the end, just like me, He already has a head start from me as he's getting all the help needed way before I did my email address is [email protected] if anyone wants to chat. Lou xx:)

Orchid2008 · Aug 14, 2008, 07:22 PM

Originally Posted by corriehac

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.

My daughter just turned 13 and was born with De George Syndrome. She has had special services since she was about 1 year old. She is now getting out of Special Ed and graduated into an inclusion class . It seems as the children go through adolencence they have more health problems. We've been through a lot and continue to face new challenges all the time. I would be happy to answer any questions you may have.