I want to start a support group for GA and SC. A place where family and friends can come relax,give each other advice,and to SPREAD AWARENESS about 22q11 deletion.


WHAT IS 22q11 Deletion ??????
{AKA: Velo-Cardio-Facial syndrome {VCFS}, DiGeorge Syndrome,Catch 22}
The 22q11 deletion is now recongnized as one of the most prevalent causes of birth defects including such common problems as CONGENITAL HEART DEFECTS,CLEFT PALATE, as well as speech and language delay, feeding difficulty, and Learning Disabilities.The test that confirms the 22q11 deletion {FISH} was only developed in the 1990's, so many children with the symptons of the disorder remains UNDIAGNOSED even today.

What "IF" every person: doctors, parents, teacher...etc, knew what 22q11 deletion signs was. What "IF" every newborn was tested at birth? I hope to spread the word about the disorder so that every doctor will recognize the signs and diagnose early!

About me:
My name is Stephanie, I am a mother to 3 girls { Brittany 9 Breanna 6, and Sarah 5} and an ~i~ in Heaven. My 6yo Breanna was JUST daignosed with 22q11 deletion on MARCH 23,2007. Breanna has ASD & PDA {repaired 5-26-07} Submoucos Cleft palate{scheduled for surgery 5-10-07}ADHD, Asthma, Febrile Seizure,GERD, Left kidney has a GRADE 2 HYDRONEPHOSIS and the right side has a mild HYDRONEPHOSIS.
Immune problems.