In the face of the challenges he is presented with daily, Wylie lights up the world and brings joy to all those around him.

We started to notice early on that Wylie was having a harder time than most adjusting to the world. Our hearts shattered the day he was hospitalized at just 4 months old. Wylie was placed on a feeding tube, assessed by various specialists, and endured many tests. He also went on his first airplane ride! A flight to BC Children's Hospital, not our idea of our first family vacation! We were discharged home weeks later with no answers.

In the Summer of 2024, Wylie Brit and Charlotte completed genetic testing, and by March of 2025, there was an answer! A "de novo" mutation of his CTNNB1 gene. This means it is not something Wylie inherited, rather, a spontaneous mutation that occured during the building of genetic makeup.

CTNNB1 is a rare neurodevelopmental disorder with less than 500 diagnoses world wide. It affects each child differently, but all face significant hurdles with movement, speech, coordination, and development. Coming up to his second birthday, Wylie has had to work very hard to learn how to swallow water, eat food, sit up, and crawl, amongst many other things that come naturally to most. He has a lifetime of hardwork, therapies, doctors appointments, and procedures ahead of him.

None of this can seem to dim his spirit. If you know Wylie, you know that he is the most radiant little boy who finds the joy in life's simple gifts. He loves listening to music, giggling at the breeze blowing by, and splashing in the water. 

Thank you for reading our story and for considering a donation to CTNNB1 Connect and Cure. Your donation will go to funding research for treatment with the hope of creating a cure for CTNNB1. We dream of a future where Wylie will be able to have a life full of opportunities to walk, talk, eat, and feel comfortable. The future is uncertain but full of hope!