“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!
I can’t help but see why God put your family together. My granddaughter shares many similarities with Bryce down to the song she enjoys hearing us sing. We, too, knew she was behind at around 9 months and waited a long time for her KIF1A diagnosis. She also has a loving mom and dad, older brother and younger brother. The students at her school are also very kind and caring. She is blind and loves Lauren Daigle music. She can’t walk but can get off the couch and go where she wants. She can’t speak, but laughs and gives love. I thank God when I see the wonderful parents and siblings our beautiful children have. I pray often for KIF1A families and others affected by illnesses. I lift up Bryce and pray for healing of his femur. And I pray for each of you! Nancy
Thank you for the kind words, if you are able to see this! I am just now seeing this thanks to my mother in law! Bryce is a treasure, as well as your granddaughter, and all other KIF1A kiddos!