For four years Jonah Marlin developed as any child his age would. Then, something changed. His parents, Terry and Sonya, noticed him struggling with a few things he hadn’t before and decided a visit to the pediatrician was in order. The doctor, also concerned, referred the family to a specialist. The shocking diagnosis of Duchenne Muscular Dystrophy (DMD) came one week before Christmas in 2008. DMD is a fatal genetic disorder characterized by progressive muscle degeneration and weakness. Realizing that DMD was a genetic disease typically affecting boys, the Marlins also had their two-year-old son Emory tested. He too was diagnosed with DMD.
Jonah is now 16 and Emory is 14. The challenges they face as the disease progresses continue to evolve. While Jonah is doing well overall, he has zero muscle function and worsening painful scoliosis. He will have spinal fusion surgery involving the placement of two rods to correct his curved spine in the near future. Emory is expected to have the surgery first though this fall following a recent G-Tube surgery to strengthen him beforehand.
Driven by the motto “live for today without the worry for tomorrow,” the family still prioritizes living life to the fullest each day, even if that means focusing on the small things that bring joy. Terry says they reflect on the peak moments when they are in the valleys along their journey.
The family’s favorite activity has always been traveling. In the last three years alone they’ve been to Disney World, Chicago, Hawaii, Breckenridge, Destin, Florida, London and Paris. Though these trips provided wonderful memories, they also included some challenges associated with the general inaccessibility of the world, something Terry openly discusses in an effort to drive awareness and advocate change.
Emory’s pain and the COVID-19 pandemic have sidelined some of the family’s plans. While the boys have been able to continue to receive care during this time, the required surgeries are difficult because they can’t be together. As the family observes the worldwide uncertainty brought about by the pandemic, they are already well aware of the life changing impact of a fatal disease with no cure. Their world-changing COVID-19 event happened in 2008 when their boys were diagnosed with DMD. But they know that most people don’t realize the difficulties in life until their lives are affected personally.
The Fight DMD foundation the family established to fund research in the hopes for a cure has now raised over $1.4 million. The foundation was recently awarded the first DMD cardiac trial, called the FightDMD trial, involving a partnership with Vanderbilt Children’s Hospital and Cumberland Pharmaceuticals along with several other sites in the U.S. They remain hopeful about some of the DMD advancements such as the Exon 51 Skipping trial, Crispr/Cas9 and the Exon 54 trial currently in development that could be beneficial to both Jonah and Emory.
The foundation will host the 11th Annual Golf Fore a CURE event today, Friday, September 18. A new book titled Friends featuring characters Jonah and Emory who have an illness called DMD has also been launched with proceeds supporting DMD research. To find more information about the book, sponsorship opportunities and the latest news from the foundation, visit FightDMD.com.
