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A Family’s Journey: Kennedy Krieger’s new Center for Genetic Muscle Disorders helps mother and son live with muscular dystrophy
A Mother’s Story
It’s 1976 and flash bulbs pop as eager relatives urge seven-year-old Lilleen Walters to smile for the camera. Feeling fancy in her flower girl dress, she fights to curve her lips into a smile to please the wedding guests, but her muscles won’t obey. Days and months go by, and Lilleen still can’t smile. Doctors believe she is depressed, and recommend counseling and antidepressants. They don’t help. Years later, when she is 15, Lilleen is diagnosed with facioscapulohumeral muscular dystrophy (FSHD), a genetic, hereditary muscle disease that causes progressive muscle weakness.
In a desperate attempt to build up her muscles, Lilleen begins working out and lifting weights, not understanding that nothing she can do will stop her muscles from weakening over time. Making matters worse, doctors tell her there is nothing they can do and that she will be in a wheelchair by the time she is 30.
Facing an uncertain future, Lilleen was determined not to let the disease hold her back. She threw herself into dance, gymnastics, and skiing, never letting an opportunity pass her by. And when she grew up, it was time for the little flower girl to have her own wedding. When she became pregnant, she was surprised and worried because doctors had told her she would never be able to carry a baby to full term because her stomach muscles were too weak. But nine months later her beautiful baby boy Collin was born.
A Son’s Story
At six months old, Collin had a smile that could light up a room, and Lilleen began to hope that he had escaped the genes that cause FSHD. But when Collin turned one and she took him in for a portrait and watched the photographer coo and wave toys at Collin to get him to smile, it was as if she was that little flower girl all over again, and she began to worry that something was wrong. At home she noticed other little signs that he might have the disorder: he often walked on his tippy toes, which suggested hip muscle weakness, and he could only eat for a few minutes at time, which indicated that he might be having trouble with the muscles in his mouth.
At a meeting of the FSHD Society, Lilleen met Dr. Kathryn Wagner, who was conducting a trial for new treatments for muscular dystrophy. She introduced herself and after spending some time talking with Dr. Wagner, decided to enroll in the trial and have Dr. Wagner examine Collin. As a result, Collin was formally diagnosed with FSHD. Lilleen hadn’t known about infant onset FSHD, or how severe it could be, but with Dr. Wagner’s guidance, she felt comfortable that her son would receive the care he needed.
Dr. Wagner prescribed steroids for Collin to help him bulk up to compensate for the muscle he was losing as he got older, and she helped him through the decision to get a scooter so it would be easier for him to get around school. Because FSHD is a progressive disorder with no cure, managing the disorder and helping patients adjust to daily life is crucial.
“There are so many little things people take for granted that Collin and I have trouble doing,” says Lilleen. “We struggle with things that seem as simple as stepping up onto a curb or brushing our teeth.”
A Story of Hope
For Dr. Wagner, working at Kennedy Krieger means an opportunity to continue her study of muscle disorders in hopes of finding new and better treatments while also caring for her patients.
“One of the reasons that I came to Kennedy Krieger is that time is so short — for everyone. The patients have limited time as their weakness progresses and I have a limited time to make a contribution to improving their condition,” says Dr. Wagner. “The support that Kennedy Krieger provides me, my staff, and my patients facilitates the translation of our laboratory findings into clinical trials and into clinical care.”
When Lilleen learned that Dr. Wagner would be establishing a Center at Kennedy Krieger, there was no question that she would follow. Not only had Dr. Wagner become a trusted friend and expert, but the Institute would offer new services and opportunities for Collin. The Institute’s experience in caring for children with developmental disabilities means that Collin will have access to the best in rehabilitative services, experts in assistive technology, and he’ll be able to continue seeing Dr. Wagner.
“Now Collin gets to see all the specialists in one place. It’s really nice not to have to schedule one appointment after another,” Lilleen says. “But what’s even better is that they’re all able to sit down together with Collin and figure out the solution that works best for him.”
And because Kennedy Krieger has been treating patients with developmental disabilities for so long, the Institute’s doctors and therapists have watched their patients grow up and live with their disorders, so they are well-equipped to care for Collin throughout his life.
“I know that this is a place where my son will get the care he needs as he grows up,” says Lilleen. “Kennedy Krieger is going to open so many doors for Collin.” —Meredith Purvis
The Center for Genetic Muscle Disorders at Kennedy Krieger
This summer Dr. Kathryn Wagner has joined Kennedy Krieger Institute as we launch the Center for Genetic Muscle Disorders. Dr. Wagner has more than a decade of experience researching and treating muscle disorders. The Center will focus on the diagnosis, research, and treatment of a variety of muscle disorders including muscular dystrophies and congenital myopathies (muscle disorders present at birth). The combination of Dr. Wagner’s expertise and the Institute’s unique understanding of childhood developmental disabilities will give patients at the Center much-needed access to world class facilities, rehabilitative services, and assistive technology under one roof.