But Frank’s goals are different than most of his classmates because of his premature birth and muscular dystrophy.
“I was born four months premature and weighed just 1 pound, 9 ounces,” said Frank, who is now 18. “And because I was 12 inches long, I was known as ‘Foot–Long Frank.’”
Frank suffers from Duchenne muscular dystrophy, a rare genetic disease that affects fewer than 200,000 in the United States. It is a debilitating condition – but one that’s seen recent advancements in the search for a cure.
Frank said that his future goals are to live one day at a time and to achieve his daily goals. These goals include staying healthy, going to school, and playing hockey.
Frank was diagnosed with Duchenne’s at 5. The disability has forced Frank to use a wheelchair and depend on others for help eating, dressing, and using the bathroom.
Frank will need that help for the rest of his life since Duchenne’s destroys muscle tissue all over the body, according to WebMD.
Duchenne’s symptoms appear in male children before age 6. Symptoms include muscle weakness of the legs and pelvis, and loss of muscle mass is common. Eventually, the disability spreads to the legs, arms and spine. Early signs may consist of an enlargement of the calf muscles, low endurance and difficulties walking or standing.
Frank’s main caregivers are his parents.
Terri Frank said helping her son isn’t a big deal because it is what life has given them. She said Frank only allows the family to focus on the positives, not the negatives of the disability.
Two positives in Frank’s life are wheelchair hockey and art.
Frank plays hockey for the WheelChair Hockey League of Michigan, which allows people in manual or power chairs to play floor hockey and make friends. The league consists of over 40 players with a variety of disabilities. Frank is a defensive specialist or goalie, depending on the situation.
“Hockey is something I really enjoy,” he said. “It’s somewhere your disability doesn't matter. It’s great that anyone can play hockey no matter your ability. It’s nice to belong to a team, learn to work together and to compete against other teams. It is fun and I enjoy making new friends.”
Frank also has a passion for art. He attends the William D. Ford Career-Technical Center to work with graphic design and plans to continue in college. Frank also likes to draw freehand.
“My art is a source of a peaceful time to just kick back and relax,” Frank said. “It allows me to be creative. I like to see people’s reactions to my work. I give most of my art away as gifts so other people can enjoy it. This is my way of giving a part of me to others.”
The Muscular Dystrophy Association is Frank’s main source of medical care. The MDA initially diagnosed him, and explained what it meant and what to expect. The organization also assists him in arranging doctor referrals, a variety of both physical and occupational therapies and more.
“They go over everything to see if I need any new equipment and helped to purchase a new power chair for me,” he said.
The MDA has made strides in finding a cure for Duchenne’s. A significant advancement was made in 2007 in stopping the fatal disease.
Research by the Pennsylvania School of Medicine found a potential therapy that could slow the onset of the dystrophy. Dystrophin is the defective protein that causes muscles to develop weakly as an individual ages.
But the experiment on mice showed urophin, which is a contraction for “ubiquitous dystrophin,” could act as a substitute for the defective protein. Utrophin RNA is abundant in the kidneys, liver and brain and assists in normal cell maintenance.
Whether a cure is on the horizon remains to be seen.
“I would want a cure to keep me where I am and to make me stronger,” Frank said.
Despite all he’s endured, Frank said he’s learned anything is possible.
“My physical weaknesses are also one of my strengths,” Frank said. “I refuse to let my disabilities hold me back. I just push harder and focus on my abilities to reach my goals and new challenges.”
Frank's Art and Hockey Championship
All photos provide Mike Frank
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