Chase is a two-year-old boy who resides in Worcester, MA with his mom Amy, his dad, Shane and his big brother, Nathan. He is affectionate, loving and tough. His favorite things are being with his family and getting cuddles.
We invite you to read more about his story and support Chase through a purchase from our shop where every purchase will help cover the cost of a stairlift for Chase. You can also subscribe to our podcast and hear our interview with Chase’s parents releasing May 24th.
“He takes a lot of time, a lot of effort, a lot of energy. He can’t give a lot back and yet, I could not love a human being more than I love him.”
When Amy was pregnant with Chase she had a very uneventful pregnancy until the end of her term. Towards the end of pregnancy the doctors remarked that Chase was not keeping up with the growth charts, so they decided to induce Amy. When Chase was born there was nothing concerning about him and they were sent home. Around four months later, Amy began to notice that Chase was not doing the things that an average four month old should be doing. The doctors assured Amy and Shane that he would meet these milestones within his own time and that everything was fine.
When Chase was six-months old and was still not meeting his milestones, Amy and Shane had him evaluated by a neurologist. The neurologist immediately knew that something was significantly wrong and that it was most likely caused from a brain issue. Following this evaluation they had a slew of tests and it was the MRI that confirmed his diagnosis of the most severe form of Polymicrogyria. Polymicrogyria is defined as a condition that is characterized by abnormal development of the brain before birth. According to Shane, “It is many small folds. If you look at his brain it doesn’t look like yours or mine. We have all the different edges and everything – his kind of looks like a marshmallow.”
After this diagnosis the neurologist informed them that it would be likely Chase would develop epilepsy. At seven months old Chase’s seizures began and have progressed to where they are happening almost daily. Chase has had as many as 18 seizures within 24 hours.
Along with his diagnosis of Polymicrogyria and Epilepsy, Chase also has the diagnosis of Microcephaly, Quadriplegia Cerebral Palsy, Hypotonia, Laryngomalacia, Reactive Airway Disease, and Cortical Visual Impairment.
Today Chase is developmentally at the level of a two-month old. Amy and Shane have been told he will never walk, talk, or be potty trained. Throughout all the challenges, there have been many moments of joy and love between Chase and his family. He is creating a strong bond with his big brother, Nathan. Nathan was three when Chase was born and has had to grow up and mature in a lot of ways unusual for a kid his age. His parents share that he has a healthy grasp on life and has learned a lot of valuable skills because of Chase.
Shane shares how his faith has helped him walk through this journey – “What I came to peace with was that I do believe it is part of God’s plan. I do believe God’s plan is better than my plan even though I can’t always see the tangible evidence of that. I think faith in the sovereignty of God, knowing his ways are better than mine gives me confidence that he’s got a plan and he’s going to redeem this situation in a way that is far better than I can come up with. And one piece of advice for families going through a similar journey…Enjoy the moments. Enjoy each day and leave the big picture and the long term stuff up to God.”
Time to get loud shouters!
Throughout the month of May we will be shouting love for Chase and four other kiddos with their own special and unique stories. We hope you will join us in getting to know these five incredible families.