“His smile is contagious and his baby blue eyes will make your heart melt!”

A Message from Bryce’s Family:

Bryce is my sunshine. The song I sing to help calm him if he’s having a bad day is “you are my sunshine.”

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 things. He started PT and OT at 10 months and was diagnosed with hypotonia (low muscle tone) shortly after. He has already had tubes and strabismus surgery in his short life. He is still suffering from eye issues, even after the surgery. We believe he could be having seizures, but haven’t been able to have a long EEG yet for confirmation. He had a normal brain MRI and I thought he was fine. He has severe hypotonia that affects his trunk area the most and feeding difficulties, so he has also recently started feeding therapy as well. He would just be a little behind.

Our world turned upside down in March 2020 when he received his KIF1A diagnosis. This was something completely unexpected. The word neurodegenerative never crossed our minds until we heard it.

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.

Bryce goes to a typically developing daycare and we are told that the other kids love him and care for him while he’s there. His smile is contagious and his baby blue eyes will make your heart melt! He doesn’t meet a stranger, and although he doesn’t speak actual words or phrases yet, he is the most social child and can babble and grunt to express himself! He is our precious boy and his dad and I will advocate on his behalf for the rest of our life!

Comments

  1. 1
    Nancy Box on May 28, 2020

    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

    1. 2
      Krystalyn on June 23, 2020

      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!

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