22q Teen's 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.


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Jonathan (“John”) Christopher Adams is now 21 years old. He was not diagnosed with Chromosome 22q 11.2 Deletion Syndrome until about the age of 13. He also has been diagnosed with Autistic Spectrum Complex. John will be graduating from High School in June 2012. He lives in south-central Pennsylvania in the small rural town of […]


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Leah Ryan is now 17, and amongst other things she has experienced learning difficulties and problems with fine motor skills since she was a baby – but was only diagnosed with a mild form of the 22q11.2 deletion syndrome when she had just turned 12. Her parents have ignored any temptation to push her towards […]