Meet Emmett and his family
Watch to learn more about how Emmett’s family has navigated his Duchenne diagnosis and treatment.
These are the inspiring videos and stories of families living with Duchenne. In their own words, find out how they stay motivated to push through their challenges and live life to the fullest.
Meet Emmett—he is living with Duchenne and he is a paid ambassador.
Growing up in rural Kentucky, 13-year-old Brantley has experienced no shortage of adventure. On a sunny day, he might be found catching catfish or crawdads at the neighborhood river, playing with his rambunctious chocolate labrador retriever, or helping tend to his family’s chicken coop. Saturday mornings are typically spent indulging in a spread of gravy and biscuits, a southern staple prepared by his mother, Dianna.
Like most teenage boys, Brantley enjoys movies, video games, and hanging out with friends, none of which has changed since he received his diagnosis of Duchenne muscular dystrophy (DMD) at age 7. DMD is caused by a genetic mutation and results from muscles not having enough dystrophin, which is a key part of a group of proteins that strengthen and protect muscles as they contract and relax.
When Brantley was 4 years old, his parents noticed that he was having trouble keeping up with other kids—falling down often and showing signs of physical delays. By age 6, they started taking him to specialists who suspected DMD, which was later confirmed through genetic testing. They received the diagnosis 3 days before Brantley turned 7.
“Hearing the diagnosis of Duchenne was devastating to be honest. You just don’t think something like this will happen to your family.”
Once they had the diagnosis, his father EJ didn’t hesitate to identify ways to help his son live more comfortably and independently. EJ leaned into his carpentry skills to build home modifications, including an accessible ramp leading to the front door, a custom chair, and a lowered bedframe.
“I’ve always been determined to not let Duchenne limit Brantley in his daily life if I can help him do things on his own,” EJ says. “Even small adjustments, like cutting off the legs of his bed to help him get in and out by himself, has made a difference helping him feel more confident and independent.” When Brantley adopted his dad’s passion for crafting and woodworking, the 2 began working together on projects, creating a special bond. The 2 spend their time together tackling DIY projects, including building a brooder box (for baby chicks) and a birdhouse.
With every lifestyle change brought on by the DMD diagnosis, the family continues to seek out the silver linings, partially attributing their family’s inseparable bond to the ways in which they have rallied together to support Brantley. Brantley’s 3 siblings—Trinity, Riley, and Grady—pride themselves in being their brother’s biggest cheerleaders. They regularly accompany him for his nightly stretches and medication routine, which often leads to quality time spent battling one another in video games or competitive board game matches.
Their active involvement is also evident when every 6 months, Brantley’s family piles into their car for the 3-hour trek to Cincinnati Children’s Hospital. Brantley’s parents and siblings stand by his side as he undergoes his bi-annual checkup, which is often followed by fun family excursions to local landmarks like the Cincinnati Zoo or aquarium. “As the oldest, I always do my best to advocate for Brantley, to make sure he always knows he has someone in his corner,” says Trinity. “His diagnosis has only made our family stronger—we’re more determined to celebrate the small milestones and cherish the moments we spend together than ever before.”
Through every lifestyle modification, rounds of treatment, and doctors’ appointments, Brantley and his family face life with Duchenne one step at a time. In challenging moments, they lean on one another, as well as their wider support system—extended family, friends, teachers, and members of the DMD community—as their conduits of strength. There’s no doubt that the unwavering support in Brantley’s life emboldens him to dream big and push himself out of his comfort zone. In the short term, he plans to attend sleep away camp at the Muscular Dystrophy Association (MDA) Summer Camp. Longer term, his aspirations include becoming a doctor so that he can help other people. As they look ahead to the next chapter, his family remains certain that Brantley’s charismatic personality will take him far as he continues to be a source of light to everyone he meets.
Watch videos and read stories of families living with Duchenne.
Watch to learn more about how Emmett’s family has navigated his Duchenne diagnosis and treatment.
Learn more about Nathan’s family and his life as a teenager with Duchenne.