For the first four years of Jonah Marlin’s life he developed as any child his age would. Then, something changed. His parents, Terry and Sonya, noticed Jonah struggling with a few things he hadn’t before. Jonah’s pediatrician, also concerned, referred the family to a specialist. The shocking diagnosis of Duchenne Muscular Dystrophy (DMD) came one week before Christmas. DMD is a fatal genetic disorder characterized by progressive muscle degeneration and weakness. Now aware that DMD is a genetic disease typically affecting boys, the Marlins also had their two-year-old son Emory tested. He too was diagnosed with DMD.

The struggles that come from the boys’ progressive conditions are challenging. But, the disease doesn’t stop the Marlins from living life to its fullest. Their favorite activity is traveling. Together the foursome has been on a Mediterranean cruise and visited Spain, France and Italy. Their favorite annual activities include: snowmobiling and dog sledding in Breckenridge, Colorado; visits to Disney World; and hitting the Florida beaches where the boys enjoy independence on the sand in their beach wheelchairs. One of the family’s favorite experiences was a trip to Hawaii that included an on-set visit to see their friend Anson Mount as Black Bolt in a taping for the ABC series Marvel’s Inhumans, followed by a helicopter tour.

With few options and little information on Duchenne Muscular Dystrophy available, the family established Fight DMD, a foundation to fund research in the hopes for a cure. The Marlins realize their journey with the disease may be fraught with challenges, but acknowledge it has also brought joy through experiences they may not have sought out and shared otherwise. While they await a cure, chairs and other mobility solutions give the boys the independence and freedom to live life as kids. And, that’s just what they’re doing.


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