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Review for 22Q Texas, Dallas, TX, USA

Rating: 5 stars  

After an emergency c-section, our beautiful son was born. We learned on the second day of his life that he had congenital heart defects and at 2 months old, he had open heart surgery. Because the cardiologist ordered genetic testing in the operating room (thankfully), at 4 months old, he was diagnosed with DiGeorge Syndrome. When I looked that up on the internet, I found published medical articles about schizophrenia and immune system problems. I only figured out years later that the syndrome was also called Velocardiofacial syndrome or 22q11.2 deletion syndrome. With new terms, I found more resources and people who were going through the same journey - of unawareness in the medical and educational communities. I helped found this group of families dedicated to improving the lives of all people affected by 22q11.2 in Texas and beyond. We will connect you with resources, share our stories and support you in your own journeys. We are all in this together and we will make a difference!

Role:  Board Member