When Jason Fox was just a child, doctors told his family that he would most likely not live to 18 years old. He had been diagnosed with Duchenne muscular dystrophy (DMD), one of nine forms of muscular dystrophy, in first grade. At the time, nobody knew how the condition would progress—or what impact it would have on Fox’s life.
Today, reports Rina Nakano in KCAL News, Fox is 24 years old and spends his days with friends, family, and the Anaheim Ducks—his absolute favorite hockey team. Over the years, Fox has lost the ability to move his hands. This hasn’t stopped him from pursuing an education, playing games, and remaining actively connected to his community.
During a video visit with Fox, Dr. Erin Gregg-Newman noticed his Anaheim Ducks fascination and hatched a plan. Dr. Gregg-Newman wanted Fox to have the opportunity to see a Ducks game live. She leveraged hospital connections and joined with the Ducks in setting up private box seats for Fox and his family. Fox got to see the Ducks beat the San Jose Sharks, live and up-close, and plans to continue supporting the Ducks in the future.
The Details: What to Know About Duchenne Muscular Dystrophy (DMD)
Duchenne muscular dystrophy is a rare genetic muscle disorder. This disease is characterized by an inability to make dystrophin in muscles. Dystrophin is a protein that strengthens muscle fibers and protects them from injury. When your muscles don’t have enough dystrophin, they weaken. In DMD, this leads to eventual quadriplegia, as well as heart and respiratory weakness. Because of the inheritance pattern, DMD is predominantly seen in people assigned male at birth (AMAB); only 1 in every 50 million people assigned female at birth (AFAB) have DMD.
Symptoms of DMD typically appear in early childhood before six years old. These include muscle weakness that begins in the pelvis, thighs, and legs before progressing; frequent tripping and falling; difficulty walking or moving positions; fatigue; enlarged calves; joint contractures; reduced bone density; and cognitive impairment. NORD offers a more comprehensive list of potential characteristics.
