22q Adult Stories

You are not alone! Below are stories you have shared with us. These stories will help you gain an understanding and shed light on some of the milestones, setbacks, and steps of dealing with the disorder. Each story is as unique as the person the story is about. Together the stories help us learn about our community. Do you have information you'd like to share about a child or adult with a 22q11.2? In a few weeks we will have an online submission form for you to share your story on the website and our annual calendar.

Amy

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I guess I didn’t want to leave the warm cocoon of my mother’s belly because of all the problems in the world I would face with my health. That was evident when they found that when I exited finally the cord was wrapped around my neck. So life begins as a “blue” baby. And that’s […]

Amy

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Amy was born a blue baby. She had difficulty feeding, frequent illnesses and cried with discomfort almost constantly. At 13 months, Amy had heart surgery to repair a large VSD and release a vascular ring. Her attitude and energy improved and she learned to crawl, then walk by 22 months. Infancy through elementary school years […]

Jeff

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Jeff was born on November 23, 1992 and we immediately knew he had a cleft of the soft palate and low calcium levels. We were told that nothing else was wrong with our son. We took him home on Thanksgiving Day that year and he immediately began having feeding problems. We struggled with these feeding […]

Lindsay

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My name is Lindsey Flax and I am a 19-year-old adult who is living with 22q deletion syndrome in Atlanta, GA. It all started in December 1995. Four months after I was born August 12th I was diagnosed with tetralogy of falot. As doctors, they noticed that something was different about my DNA. They decided […]