By: Emma Evans
As brothers, my teenage sons Alex and Jake share many things. Unfortunately, having CMT is one of them.
Alex and Jake inherited CMT from their father. He was diagnosed at a young age but had no clue what type he had. When I met him, we didn’t even know there were so many types of CMT. Our boys were diagnosed with CMT in 2015 — CMT dominant intermediate type E. It’s caused by a gene mutation in the INF2 gene which damages the kidneys and eventually results in complete kidney failure. Their father’s kidneys failed in 2006 and then in 2007. Ten months later at the age of 26, he passed away from a heart attack due to complications from kidney failure. We didn’t realize it was CMT that led to his death until a geneticist diagnosed my boys in 2015.
A Family Legacy We Must End
I worry every day that history will repeat itself and that I’ll lose both my boys like I lost their father. I want them to grow old, have families and not worry about passing this awful disease on to their children. I don’t want this to be our family legacy, and I certainly don’t want another generation to know what it’s like to have this terrible condition.
For Alex, tight hamstrings cause him to walk on his tiptoes, and he’s unable to put both feet flat on the ground. This results in constant falls. He also has weakness in his wrists and hands and is unable to do basic things most teenagers can do. Alex has the start of kidney disease and high-pitched hearing loss caused by his CMT.
His younger brother Jake was born with clubfeet and has had numerous operations over the years. The effects of having CMT have not only affected his physical health but have taken a devastating toll on his mental health as well. Unable to play sports or do many activities like other kids, he feels angry and frustrated. Jake also has high pitched hearing loss.
Today there are no treatments for my sons and other kids like them. That needs to change. Research is the answer to make effective treatments and better lives possible.
Speed Treatments for CMT
While no treatments or cures currently exist for CMT, the science to change that does. Your donation to the CMT Research Foundation will fund cutting-edge research that’s solely focused on drug development, so we can change the course of CMT during our lifetime — and for every future generation. Donate now.
READ NEXT: What a Treatment Would Mean for Three Siblings Who Share CMT
Tell Alex he’s not alone. My 17 year old boy also has muscle atrophy in his hands. He plays video games and that seems to help keep his hands from becoming worse than his feet/calves. If he needs another teenager to talk to, my boy can be someone he can reach out to.
My beautiful grandsons its hard noing how much they suffer from this xxx