Greyson's Story

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Greyson

Kitchener-Waterloo Ambassador (2019-2020) 


A bright and friendly little boy who loves the camera, Greyson is 5 years old and loves running, jumping, climbing and riding his scooter. But he didn’t have an easy start in life.

At two months old, his health took an unexpected turn with weakness in his muscles and head, so he was referred to KidsAbility. Greyson began weekly physiotherapy and occupational therapy but after turning one, he had signs of heart failure and had open heart surgery to repair his heart. Upon healing, he came to KidsAbility where he learned how to crawl and received speech and language therapy to help him communicate.

But more difficult news came for Greyson’s parents Stephanie and Stewart. He was diagnosed with a rare syndrome, ADNP, affecting his organs and genes, one of only 85 cases worldwide. “When he was diagnosed the geneticist told us he would never talk, walk, or go to school and that his future would be pretty grim,” says his mom Stephanie. “They handed us a piece of paper with his diagnosis and wished us luck. I remember calling KidsAbility to cancel an upcoming appointment while we processed the diagnosis. Two days later, I received a call from KidsAbility, where the team developed a plan that would help Greyson move forward. For the first time since his diagnosis it felt like we were being given help and hope, and most important, we were not alone on this new journey.”

Today Greyson loves to sing and dance. For a little boy who had a rocky start, his life is nothing short of miraculous. Greyson and his family will be appearing at numerous events in Kitchener and Waterloo this year to help raise awareness and funds for KidsAbility!