Gretchen (L), was only eight years old when she complained that her feet and legs hurt all the time. She walked knock-kneed because her high arches were collapsing, causing her feet to turn inward. She felt clumsy, and fell often, frequently hurting herself. Although Gretchen had been seen consistently by a pediatrician, he never noticed the early signs of something much more serious was developing. Finally, an orthopedist diagnosed her with Charcot-Marie-Tooth (CMT). At 11 years old, Gretchen was forced to wear leg braces to help with her walk. They were immensely painful, and left permanent bruises on her young, already aching legs. This was just the beginning of the Erwin’s journey into the world of CMT.
Although three million people in the world have CMT, the genetic nerve disease is all but unknown to the average person and even most doctors.
Gretchen’s diagnosis led her mother, Brooke, to confront that she too had leg and knee issues and walked with a funny gait in her youth. As an adult, Brooke’s motor function and physical agility had also slowed. A visit to a clinic confirmed that she not only had CMT but passed it to her daughter. Brooke was devastated. “It’s a mother’s job to protect her children, not give them struggles and health problems”, she thought.
Brooke Erwin’s maternal guilt and pain would double several years later, when she learned, her younger son, Evan, also had CMT.
Both Evan and Gretchen have gone through multiple painful surgeries to try and relieve the excruciating and debilitating symptoms of CMT. The Erwin family remains positive and works relentlessly to not let CMT keep them down.
Gretchen, now in her twenties, worries about passing it to her own children. Will CMT be cured or a treatment available in time for Gretchen to start a family free of the disease?
The CMT Research Foundation opened its doors with one mission: to find the imperative research to accelerate the delivery of treatments and cures for Charcot-Marie-Tooth. Together, we can be the catalyst for the cure for CMT – now is the time.