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Colorado, USA
9 years old
May 22, 2019

Will

Will is a 9-year-old boy who was diagnosed with Syngap1 when he was 6 years old. It was noticed he wasn't developing normally around age 12 months. He had no spoken words and was not attempting to walk at all; was barely crawling. Will remains nonverbal. He is very vocal, however, and I believe he has a lot he would like to say. Will uses a speech generating device and goes to an amazing school where he is encouraged to communicate all day long with it. Will has been in various therapies since he was 18 months old including speech, occupational, physical, and behavior therapies. He has a seizure disorder which includes atypical absence and atonic seizures. He had many drops as a toddler from the atonic seizures and has had stitches and staples in his head, loss of nerve function resulting in a gray front tooth which thankfully came in white as a permanent tooth, as well as a fractured clavicle. He eventually got a protective helmet which helped with head injuries. Will has tried many seizure meds and has never been fully controlled. He had a vagus nerve stimulator (VNS) implanted when he was 4. After that it felt like we experienced a miracle. His drop seizures seemed to have been cured. He still takes two heavy seizure meds as well and we see occasional breakthrough absence seizures. Will has aggressive behaviors when denied access to what he wants. He also doesn't understand danger and is a very fast runner who doesn't normally listen when told to stop. Will is an extremely-active child and rarely will you see him not moving. He loves playing basketball, climbing stairs, watching ceiling fans, and opening and closing doors. He is also very affectionate and loves the people in his life. He has a fun-loving personality and you can't help but enjoy his genuine happiness.

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