Will has PACS1 genetic mutation, Peter’s Anomaly (glaucoma and blindness of one eye), and an autism spectrum diagnosis. He is nonverbal and his gross motor skills and balance are impacted by both the genetic syndrome and his visual impairment. Will understands most of what we say, whether he appears to be listening or not. He is very social and eager to interact with his peers but being both nonverbal and uninterested in pretend play, he struggles to connect. His favorite ways to play with peers are passing a ball, playing chase games and riding bikes.
When people first meet us I am sure they often have questions about Will, who he is and how to interact with him. I want everyone to know that we are always happy to answer questions and that I don’t expect people to automatically know or understand all about him. Will has a mutation to the PACS1 gene that can cause an array of issues. For Will, this is gross motor skill delays, a visual impairment and delayed speech. He is nonverbal but understands most everything we say and currently he communicates with a device. He learned to walk at 4 years old and still struggles with balance. Our life with him is different that we planned, and it can be hard. We worry about him in ways will we never fret over our other son. But I would never, ever change who he is. Today, Will is 6 years old. He is infectiously happy. He loves to laugh and clown around and experience new things, places and people. He is an incredible person and he has taught us so much about what it means to be a good human being and the value of people who different from us. An adaptive bike will allow Will to safely and comfortably ride with his brother and other kids in our neighborhood. As a nonverbal child he is limited in how he can connect with his peers and an adaptive bike will let him join in when he sees the neighborhood kids take off on their own bikes and so desperately wants to join in!
If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate
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