MOMS
company and Medicaid denied the purchase, saying a feature on the chair that helps Jackson stand is not medically necessary. The decisions are being appealed.
Jackson’s mom, Kelly, said these types of challenges are common for families dealing with Duchenne, a disease that slowly steals muscle, rendering children weaker and weaker as they grow older. Many die by their mid-20s.
Knowing the struggles too well, Kelly Maynard has teamed up with a mom in the Detroit area to form the Duchenne Family Assistance Program.
The joint venture combines the advocacy power of the Little Hercules Foundation that Maynard founded with the Team Joseph organization founded by Marissa Penrod of Commerce Township, Michigan.
While both nonprofit groups have focused most of their energy on funding research into possible treatments for Duchenne, the new program will directly assist families by helping them gain access to needed equipment, transportation and education. It also will guide them through insurance claims and appeals.
“We decided that we could share resources between our organizations to more effectively make a greater impact,” Maynard said.
Caused by a defect in a gene that produces a key muscle protein, Duchenne affects about 15,000 males in the United States. It rarely affects girls.
Through the program, unveiled in October, Penrod and Maynard have received about 50 direct requests from families across the country.
Little Hercules handles the management of cases involving insurance coverage for devices and treatments. A large part of advocacy, Maynard said, is educating payers on how essential it is to avoid delays for boys who need help.
“They just don’t have time,” she said. “Every day with Duchenne that they’re not on some kind of treatment, we’re losing good muscle tissue, and there’s a critical need there.”
Team Joseph will handle help with access to equipment and clinic visits, as well as obtaining funding for vehicle and home modifications, such as ramps that allow children in wheelchairs to get in and out of their homes.
Jackson was diagnosed when he was 5. He has an extensive Lego collection and is a huge fan of the Cleveland Cavaliers and Ohio State Buckeyes. His mom calls him “the funniest, strongest, bravest kid I’ve ever met in my life.”
Penrod’s son, Joseph, also was diagnosed at 5. He’s now a happy, 15-year-old high school freshman with dreams of attending Michigan State University.
“He sees the possibilities in everything, including his future,” Penrod said. “So we want to make sure that happens.”
She said the advocacy work has helped her cope with the devastating diagnosis.
“We find a way to manage the heartache by throwing ourselves into solutions and how we can be helpful,” she said. “I just want Joseph to leave a legacy, and I want to make his life matter.”
Duchenne is unique in that a patient’s situation is constantly changing, Penrod said. When a boy begins to struggle to get up from the floor, for example, families adapt. Then they adapt again when he can no longer climb stairs and again when he can’t walk.
”You figure out your new normal,” Penrod said. “But the disease progresses and marches on.”
Families eventually must adapt to bathing, dressing or equipping their sons with devices that help them breathe at night, she said.
With each change, there’s a need for new equipment, which families might be unable to afford without the help of insurance. Delays mean that a mother, father or grandparent might struggle to lift or move boys or young men to provide basic needs.
“We see these challenges and the need to develop partnerships and help people understand what Duchenne is and why the needs are critical and why we have such a great sense of urgency,” Penrod said. “The clock ticks really loudly for us.”