Please take a moment to introduce yourself to the community. Everyone here has something to share about DiGeorge Syndrome. For the discussion boards, we ask that you keep your full name and location private.
my 2 children have digeorge although we knew nothing about it untill my youngest was born in 2001 now i know my son is partial digeorge my daughter fullbown.’
my 2 children have digeorge although we knew nothing about it untill my youngest was born in 2001 now i know my son is partial digeorge my daughter fullbown.’
I HAVE 2 KIDS WITH THIS SYNDROME MY 12YR.OLD BOY HAS A PACEMAKER, ADHD,RETARDATION, SPEECH PROBLEMS, BIPOLAR,PROBLEMS WITH HIS VISION. I REALLY NEED TO KNOW MORE INFO ON THIS AND TRY TO FIND WAYS TO HELP HIM AND MY FAMILY DEAL WITH THIS. HE IS VERY VIOLENT AND IN A FOSTER HOME NOW BECAUSE HES A THREAT TO HIS SELF AND OTHERS. EXPELLED FROM SCHOOL HE CAN BARELY DO A HALF DAY AND BEEN ON EVERY MED THERE IS. I REALLY NEED HELP.
I live in Australia, my dear friend’s son was diagnosed with complete Di George Syndrome. They travelled to the USA where he has undergone a thymus transplant at Duke and we are waiting for results.
Hello! I am 29 years old and I have DiGeorge Syndrome and also have Tetralogy of fallot. I also have a 4 year old son with the same defect.
I’m a first time uncle to a little girl (born March 25, 2007) named Anelise who was born with DiGeorge. Like many others, I have never heard of the syndrome until recently and I wish to read and learn from others who have personal experiences to share.
my 2 children have digeorge although we knew nothing about it untill my youngest was born in 2001 now i know my son is partial digeorge my daughter fullbown.’
My 6 year old daughter has Digeorge syndrome. Hope to meet people and be able to talk them about it. She was just diagnosed in March 07.
My grandaughter was born in Dec. with DiGeorge/Tetralogy of Fallot. She had heart surgery at 4 days old, with another to follow this summer. She is 4 months now and I am wondering what we can expect as far as milestones. Walking, talking, etc.
Hi, I have an 11 year old son with D-George Syndrome - fantastic little boy not without his problems - we’ve read every magazine & comic in every hospital waiting room but as he’s getting older the visits are getting less! We’ve certainly been on many a roller coaster ride of anxiety and then jubilation when he’s reached those milestones we never thought achievable. Would love to hear from other Di-George families.
Mom to Monica (VCFS/22q11) who just turned 13yo yesterday (4/17) with trach & gtube & a brown belt in karate.
I’m a Parent Advocate helping families with their children with special needs in school with IEPs & 504 plans
My granddaughter was born 16 days ago with DiGeorge Syndrome. On day 6 she underwent open heart surgery for her truncus arteriosus. Her heart is doing very well now. What can I do to help?
My daughter Ramona is almost 5 months old and was recently diagnosed with 22q11 deletion.
HI my name is Sherry Pickett and I have a son with the DiGeorge syndrome he is seven years old and has had three open heart surgeries and expected more. I also have the DiGeorge Syndrome as an adult. Did not know it till after our son was born. Want to know more on working with the schools with this syndrome.
Thank You,
Sherry Pickett mom to Matthew from Kentucky.
Mi name is Silvina and my son has digeorge syndrome
Hi!, I am Judy, I am the oldest woman with Di George
I have 3 generations, with Di George.
Feel free to ask questions!
I am out and about alot these next few weeks helping my
mother-in-law who just had a hip replacement! But will check messages when home. She is doing fine by the way!
Cheers,
Judy
My daughter Ramona is diagnosed with 22q11. I’d like to meet other parents facing the same difficult issues…
Hi, I am Karen. Mother of seven. I have an adopted daughter with DiGeorge. She is 2 1/2 yrs old.
Hi, my name is Debbie and I have a 2 year old daughter with DiGeorge.