In February of 2008, four year old Owen Dumm was diagnosed with Duchenne Muscular Dystrophy (DMD), an incurable genetic disorder characterized by progressive muscle degeneration and weakness.
"We don't get remission, we don't get a break. This is a beast of a disease and it doesn't stop."
"We don't get remission, we don't get a break. This is a beast of a disease and it doesn't stop," says Owen's mother Jen Dumm.
By eight years old Owen was wheelchair bound and undergoing constant care and treatment at Cleveland Clinic Children's.
"They just walked us right in to our new normal. I think if it was any other doctor that explained what his condition was I don't think we'd be as brave as we are today, and I certainly know Owen wouldn't be as courageous as he is today," says Jen.
After Owen's diagnosis, Jen and her husband Tony made it their goal to give Owen and his two brothers as normal of a life as possible.
They got Owen a therapy dog for Christmas that year to help him. Owen's all-terrain wheel chair also made a huge difference in providing him newfound mobility and independence so he could explore and hike with his two brothers in the woods near the Dumm's residence.
"He is a typical boy, that wants to live a typical life. He's kind, he's compassionate, he's got a personality and sense of humor," says Merri-Jo Somodi, a physical therapist at Cleveland Clinic.
Jen and Tony credit Cleveland Clinic Children's Director of Pediatric Neurosciences, Neil Friedman, MD, for urging them to have Owen participate in Clinic Trials. Owen now travels to Columbus every weekend to receive an experimental medication known as Eteplirsen which helps create dystrophin in his muscles.
"It has made some small, but very definite improvements in his condition. But he also realizes what he is doing is not just for him himself, but for all children with Duchenne's around the world [sic] ," say Dr. Friedman.
The Dumm's decided there was even more they could do to help patients with Duchenne's. They started a non-profit, John Owen's Adventure Inc., in order to help raise awareness about his and others' struggles with the genetic disorder.
"I think one of the important things about Owen and the family, the strength that they have, is the remarkable community around them," Dr. Friedman notes.
On May 7, 2016 the city of Brunswick, Ohio recognized Owen and the work of the Dumm family by declaring the day "Owen Dumm Day."
Each year since Owen's diagnosis at the age of four, his pediatrician Dr. Genevive Falconi has been nominating him for Cleveland Clinic’s Courage Award. This year Owen was selected as the sole recipient and formally recognized at the Cleveland Clinic Children’s Gala.
"I'm very proud of being part of the team caring for Owen. I love their family and I'm very happy that Owen and his family are finally getting some recognition for their courage," says Dr. Falconi.
"We see courage on a daily basis and Owen epitomizes courage with the adversity that he faces everyday. We all have our heroes and Owen is certainly one of mine," says Dr. Friedman.