Jodie Davies is no stranger to rare disease. When her daughter Tia was born with a genetic bone development disorder, she never could have expected her next child, Caleb, to be born with it as well.
It’s called Schwartz-Jampel syndrome and it is characterized by skeletal muscle abnormalities, abnormal bone development, and distinctive facial features. To learn more about SJS, click here.
According to the Hamilton Spectator, it’s been a tumultuous year for all of them. In May, Tia was involved in a car accident after she was struck by a car while crossing the street on her wheelchair. Fortunately, Tia did not get injured and her special wheelchair took most of the hit. To make matters worse, Tia’s younger brother Carson had his special bike trailer stolen. Carson would pull Caleb (who suffers from SJS) on that trailer during long leisurely rides of brotherly bonding.
They remember back in 2014 when Caleb had trouble waking up that one dreaded morning. He was rushed to the hospital and given a feeding tube. Over the course of the next two years, Caleb would have congestive heart failure and almost die three times. Today, he’s 13 and still pulling strong.
After everything these kids have gone through, a happiness still persists throughout the big house. Caleb underwent a tracheotomy that has helped him gain appropriate weight. This summer, he was the winner of a fishing derby, target shooting competitions and he loves to beat his aunts and uncles at poker. As a fly fishing enthusiast, he makes his own flies and jigs and even created his own side hustle company called Caleb’s Fly Fishing.
In the case of Tia, her symptoms are more external, but she does experience fatigue and energy lags. She is finishing up school and involved in a co-op at the local temple daycare where she has a lot of friends.
Of the SJS, Tia says, “Sometimes I get mad,” but she is able to conquer her emotions in her pursuit of a career in education. Getting to each class is like running a marathon for her, but she powers through it.
It’s been a rough year indeed but things are looking up for the Davies family. They’ve accepted their journey with this disease but are slowly mastering how to deal with it in every day life, while never letting go of their hobbies and dreams.