What can one little boy and his family do to fight a rapidly debilitating and (currently) incurable disease such as Duchenne muscular dystrophy? A lot.
The diagnosis of a loved one — particularly your child — is a devastating experience, but parents like Alex and Andy Johnson of Wigan, United Kingdom are inspiring the world by raising funds and awareness.
In 2012, the Johnsons’ four-year-old son, Jack, was diagnosed with Duchenne muscular dystrophy (DMD).
At the time, they had never heard of this disease, which affects one in 3,500 boys. Caused by a malfunction in the production of dystrophin, the protein essential for muscle development and use, muscles rapidly deteriorate. The prognosis is sobering. Most DMD patients will be wheelchair bound by the age of 11. The Johnsons went through the stages of grief as the reality of the diagnosis settled in. Five years later, they are resolved in their desire to do whatever they can to help their son and other boys like Jack.
“At first, Duchenne consumed us physically and emotionally, we were completely broken,” Andy Johnson writes in the blog he keeps on Joining Jack, the website he launched to raise funds for Duchenne’s research. “But we were given a choice after Jack’s diagnosis: to accept the disease and what it was going to do to our son, or to fight it. With strength from our friends and family, we founded Joining Jack and began our fight.”
The Johnsons have been battling ever since. Their efforts have brought about impressive results. Their fight led them to fund three clinical trials and 13 research projects, invested $5m in a new gene therapy approach, and co-funded a successful Phase I trial for a steroid alternative, biomarker research, and eight additional clinical trials. Joining Jack has also collaborated with patient groups across the UK to raise £1.2m to fund the addition of more clinical professionals in the field of Duchenne research and treatment.
Andy and Alex are outspoken advocates not only for their son but for all families who suffer with DMD. They host 10Ks, bike-a-thons, boxing matches, rugby tourneys, and more to continue the momentum that began five years ago.
They even helped organize World Duchenne Awareness Day (September 7). These efforts make a difference to both the Johnsons and all those whose lives they touch.
Jack, an auburn-haired kid with a twinkle of mischief in his blue eyes, smiles from the pages of the website that bears his name. He is surrounded not only by his family but by a widespread community of supporters who are pulling for him and for a cure for DMD.