Devin is 24 years old and by anyone’s guess, is a normally functioning and healthy young man. However, there is a silent, devastating disease lurking under this handsome and healthy façade. Devin has CMT4J – one of the most rare types of Charcot-Marie-Tooth; only about two dozen cases of CMT4J are known worldwide. Like ALS, CMT4J can completely devastate the body, leading to death.
Devin’s diagnosis came in his adolescent years, even though throughout his early childhood years, Devin’s motor function was slower than his peers, he struggled with eating and even schoolwork because of the yet-undiagnosed CMT’s debilitating effect on his hands. His labored breathing kept him from sleeping through the night. Alison, Devin’s mom, begged her pediatrician to refer him to a neurologist for years. Finally, the pediatrician agreed. Yet, insurance required Alison to take Devin for nerve conduction tests at a local clinic, before sending him on to a neurologist. “More time WAITING to get an answer?!”, Alison thought. The day she took Devin to the local clinic for testing, was the day their lives and world changed forever.
The clinician conducted the test and immediately after, looked at Alison and said that her son Devin had Charcot-Marie-Tooth. And with a steely, cold, and flat demeanor, added
“Your son will be in a wheelchair for the rest of his life. He has very little hope for a future.”
It was another 4 years until Devin was accurately diagnosed with his rare type of CMT – CMT4J.
Despite his disease, Devin is working hard at living every day he has to the fullest… Now in college, as a Cellular Biology and Biotechnology major, he is interested in doing his own research study to find a way to stop CMT4J from taking control of his body. But Devin and his family live under the shadow that there is currently no treatment for CMT.
The CMT Research Foundation opened its doors with one mission: to fund the imperative research that accelerates the delivery of treatments and cures for Charcot-Marie-Tooth, including Devin’s type. Together, we can be the catalyst for the cure for CMT – now is the time.