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Hello! My name is Stephanie and I have two children with the 22q deletion. There is little information on the deletion. Due to the lack of information, I frequently use the list of deletion symptoms as a point of reference. This is especially true for when I speak to others about their diagnosis (mostly doctors, counselors and teachers). My daughter, who is sixteen, has less than 10 symptoms. They have included a Chiari 1 malformation, a mild heart issue, some anxiety and growth issues. Currently, she has no true symptoms that are impacting here life. She is very much the typical teenager. She loves her computer, her phone and her friends. She is very social and makes friends quite easily. They are her life. My son who has over 25 of the symptoms is 12. He has had 8 surgeries, has a Chiari 1 Malformation, a mild heart issue, has severe learning disabilities, and a variety of mental health issues.He had issues almost immediately when he was born. He was such an unhappy guy and had severe reflux and other issues that just bothered me. As a second time parent and due to my long term work with children, I just knew something wasn\’t right. As the surgeries and school issues piled on I became even more convinced that I was correct. No one had any ideas about what could be causing all of his random, seemingly unrelated issues until his Psychiatrist/Developmental Pediatrician finally listened and sent him for the blood-work. Finally an answer! He has few friends and even fewer hobbies. he has never played well and has little imaginative play. He needs to be entertained and will rarely seek out things to do on his own. My son is the reason that we all were finally tested. We struggled for 8 years to figure out what was wrong with him and while there is no cure, it is great to know that there is a cause, that we are not alone and that we aren\’t all crazy. It is wonderful to be able to meet others who are struggling with similar issues. Stephanie

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