A disciplined runner for nearly two decades, Brian Denger’s inspirations would presumably include some of the sports world’s finest athletes. But his unlikely heroes are the research scientists who race to find a cure for Duchenne muscular dystrophy.
Since Denger’s sons Matthew, 18, and Patrick, 16, were diagnosed with the genetic disorder 10 years ago, he has transformed running from pleasure to purpose. Running is not merely a physical and emotional outlet to help Denger process the particulars of his sons’ condition, it’s also a tangible way of helping Duchenne sufferers find relief.
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With every stride, Denger is practicing a very personal relay – that of taking up the baton to advance awareness and funding for Duchenne muscular dystrophy before handing those gains off to research scientists.
For Denger, this is also a distance race requiring endurance and perseverance.
“Every step of this is situation has been difficult,” said Denger, noting that the challenges of raising money and waiting for clearance to proceed with research can be excruciatingly slow.
Denger’s inspiration for needed patience comes from his sons.
“They definitely inspire me,” he said. “Especially when I see them perform tasks that take six times longer to do than most people but it does not dissuade them. That makes me want to work harder for them. Like when I’m running a marathon and I hit mile 18 or 20 and I want to give up. I always see their faces before me and it makes me want to soldier on.”
Duchenne muscular dystrophy is a genetic disease that adversely effects proteins needed to build healthy muscle mass. Children afflicted with the disease experience rapid muscle loss in their lower extremities, making it difficult for them to balance, run or jump. Most are diagnosed by age 5 and wheelchair bound by age 12. The muscle loss progresses to include the arms, back and neck, resulting in atrophy, contortion of muscles, paralysis and respiratory distress.
The boys’ back-to-back diagnoses and resulting challenges have put the Denger family in the often unenviable position of making advances for the betterment of others, though they don’t often see the immediate benefit themselves.
Their plight first caught the public’s attention in 2000, when Matthew was a student at St. James School in Biddeford. The couple’s attempts to have the parochial school upgraded for handicap accessibility were denied. Even though funding for the project was provided by community donations. The situation triggered a legal battle and the accessibility issues were eventually resolved — but not until the Denger boys had transitioned to public school. The victory was bittersweet.
Now Biddeford High School students, Matthew and Patrick participate in extracurricular activities via fully powered wheelchairs, fitted with auxiliary adaptive equipment.
“They are both honor students and involved with student council,” said mom Alice Denger. “They attend school dances, have iPods and cell phones just like other kids their age, they just can’t walk.”
Now, the Dengers are poised to help pioneer another inroad benefiting others who struggle with the disease.
Patrick has been selected to participate in a nationwide trial to test a new drug. The medicine is not intended to cure the disease, but rather to help slow down its progression. Patrick was selected to participate in the trial because he carries the specific mutation of the disease that is being studied.
Father and son have been journeying to Nationwide Children’s Hospital in Ohio several time each month to participate in the trials.
“(Patrick has) gone through a battery of medical tests to determine eligibility for the trial,” his father said.
Alice Denger said Patrick was appraised of all the potential risks but chooses to participate anyway. “He wants to help if he can,” she said. “Being involved gives meaning to his life.”
Brian Denger uses his vacation time to attend educational conferences, clinics and do advocacy work for the cause. He’s on the National Institutes of Health Muscular Dystrophy Coordinating Committee, a Centers for Disease Control task force and is an advocate for Parent Project Muscular Dystrophy, the latter of which is overseeing the clinical trials involving Patrick.
Brian Denger advances each trip by Googling running routes near venues he intends to visit. The runs provide the physical and mental outlet he needs to process.
Last fall, he took on yet another piece of running gear; a director’s cap. He is the co-founder of the Labor Day Classic Walk/Run event that premiered in Biddeford last fall and raised $4,500 for Parent Project MD.
Alice Denger is hoping that more families affected by the disease will also attend this year’s event, set for Sept. 6.
“Even if they don’t actually walk in the event, it will help put a face on those who struggle with the disease and allow others to see the varying degrees of disability that those who have it face,” she said.
Staff Writer Deborah Sayer can be contacted at 791-6308 or at: dsayer@pressherald.com
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