My son is 14 and 1/2 and just completed drivers ED! He will get his permit in Jan. He gets stronger and healthier as he gets older (but all DeGeorge babies are different, and also similar)! School starts back in a few weeks, we will have to see how he does this year. God has a plan for us and these kids!

I am a nanny for a baby born with degeorge syndrome. When she was first born doctors said that she did not have it but now they say that she does. She had open heart surgery at three months. Tomorrow she will be six months old and has spent three of those months in the hospital. We just found out that her lungs are not growing and the doctors have said that there is nothing else that they can do for her.

My son is 7 months and has DeGeorge Syndrome. He had two open heart surgeries and some other complications. If you want to talk my email is [email protected]. Thanks!

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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]

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Hi my name is nancy my daughter is 12 and has degeorge syndrom. I would really like to talk to someone else that is going through what I go through everyday. Please contact me I would really like to talk. [email protected]

Hi my douther have degeorge syndrom she have 5 years old she had 1 sergury on the open hart when she had 8 manth first she had when she had 3 manth but it was small surgery. The last one what she have was big one about 3 houers in the uniwersyt of chicago but now she is fine:)) just litte slow with the speech she going to pre school naw secend year she is speak litte polish and litte english she is very smili girl shi is normal person , she just will be have problem with the shool and one more surgery :)))) but she like school very much when she was smool she had all 4 terapist going from the city she had problems with her hips she need to were a cave araund 2 month but now she OK :) if someone speak polish its better for me::))) my email [email protected] roza:) she had just smoll of the hromosom nnat much:)))

Hello, my grandson was diagnosed w/this syndrome right after his open heart surgery at 4 mo. His fish test showed the 22chromosome to be defective. And he did not have the thymus gland. He is a partial DeGeorge w/ 3 out of 5 characteristics. After all infant immunizations tests show that he retained 75% of all immunizations. God has truly blessed this beautiful child and has kept him healthy. He is on calcium for rest of his life but has not had to take any other meds. He has been delayed in many things, learning to walk, speak, etc. He is 6 yrs and has been in special needs pre school and will be promoted to the next level still in special needs setting. I actually have been quite frustrated medically because there just isn't enough known studies or hasn't been published about DeGeorge.

My son is three years old now. He has had two open heart surgeries for Truncus Arteriosus. He had all the tests for Degeorge Syndrome and it came back negative. He does have a duplication 7q, hypothyrodism, had a craniotomy for repair of premature closure of metopic suture, did walk late and is in speech classes currently. They told us when he had his heart surgery that he does not have a thymus. Wasn't sure if it was cut during surgery, but other wise was born without one. We have had no problems with that. He had not been sick more often or anything.

I would love to talk to anyone also... [email protected]

Here is a link to an online support group: http://www.mdjunction.com/digeorge-syndrome Thanks for reaching out and not choosing to live without support.

My son who is 3 now was born with Degeorge Like Syndrome. He also has a heart disease with pulmonary artis. Which one or both vals with need to be replaced. He just got diagnosed with moderate autism. He is one special little man though. He acts like any other 3 year old boy. Feel free to email me at [email protected] My name is Cindy.

Hi there my name is mandy and my doughter has degeorge he has a 22q11 and she is 9 ears old know I like to no if there any one out there to help me please

[QUOTE=mandy2010;3308521]hi there my name is mandy and my doughter has degeorge he has a 22q11 and she is 9 years old know I like to no if there any one out there to help me please[ if there is any one out there that has a child like min please get in tuch I find out she had this when she was a baby she has all the simtams that go with itshe don't sleep and she can talk all that well /QUOTE]