“Since KIF1A can worsen over time, we never know what tomorrow will bring. We’re IMPATIENTLY waiting on treatment or a cure as we live our lives. That’s all I ask. We don’t want riches or a lavish life. Just a cure for him to live a long, productive, pain free life.”
A Message from Cam’s Family:
Cameron is an 8-year-old ball of ENERGY. He was given his diagnosis of KIF1A in February 2019, but officially diagnosed on paper December 2018. It took 3 months for me to receive the results. He’s the only one with his mutation, which I’ve named, “Cam, the Man” mutation. Luckily, Cam is on the mild to moderate end of the spectrum since it’s possible his is inherited. He has difficulty walking so he uses crutches and wears braces. He also uses a walker and wheelchair for longer distances. He wear glasses to help his sight and has to focus extra hard to complete tasks many people take for granted.
Cam loves to laugh, dance, read books, and play Thomas Golden Tracks on his tablet. His new favorite book on Audible is Junie B. Jones and the Stupid Smelly Bus. He loves buses, tractors, and all forms of transportation.
Cameron is resilient. Not just “all kids are resilient,” but overcoming the impossible. He had surgery on both legs July 2019. The doctors said it would take a year to walk again. Cam was trying to walk before the casts came off in August. He was walking 4 months after surgery and is currently running and dancing to Koo Koo Kangaroo on YouTube! It hasn’t even been a year. He’s defied everything the doctors said he couldn’t do: walk talk, jump, you name it. He’s also one of the happiest people you could meet, with a smile that could melt anyone’s heart.
The goal is for Cameron to live an independent life with minimal assist in adulthood. I’d like him to obtain his CDL to pursue his dream of becoming a truck driver or become a firefighter.
Since KIF1A can worsen over time, we never know what tomorrow will bring. We’re IMPATIENTLY waiting on treatment or a cure as we live our lives. That’s all I ask. We don’t want riches or a lavish life. Just a cure for him to live a long, productive, pain free life.
