“To know Bryce is to love him. His smile is contagious and his baby blue eyes will make your heart melt! We will never give up the fight for Bryce!”
A Message from Bryce’s Family (updated January 2021):
Bryce’s journey began at 9 months when we expressed concerns that he wasn’t meeting milestones such as sitting or crawling. We were referred for many specialist and testing. He started PT and OT at 10 months and was diagnosed with hypotonia (low muscle tone) shortly after. He got his official diagnosis at 18 months. He has already had tubes and strabismus surgery in his short life. He is still suffering from eye issues, even after the surgery. He had a normal brain MRI at 10 months and a second at 2 years that did show cerebellum atrophy. It only took a year for a difference to be seen in his MRI. He has severe hypotonia that affects his trunk area the most. He is still unable to sit, stand, or walk unassisted at 2, he has started doing a sort of inch worm type crawl about 2 months after his 2nd birthday. He suffered a femur fracture at 20 months thanks to KIF1A. He also suffered from constant congestion the entire time he was in daycare, but since being home through the pandemic and not being around as many people, he has been well. Bryce has no real words, but does make sounds and so we do hope and believe he will eventually obtain some level of speech. He is monitored on a 6 month basis for a multitude of things that he already has symptoms of or may develop at any time in the future because of KIF1A.
Bryce has an older brother, Ryan. Ryan is his biggest supporter! He knows something is unique about Bryce, but he does not know the full extent of what’s going on yet.
To know Bryce is to love him. His smile is contagious and his baby blue eyes will make your heart melt! We will never give up the fight for Bryce! We, as his parents, will fight our whole life for our precious boy!
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