At Nemours, our neurology experts help children with muscular dystrophy (including Becker muscular dystrophy, congenital muscular dystrophy and other neuromuscular disorders) live as independently and actively as possible. Because every kid needs a chance to just be a kid.
Muscular dystrophy is a genetic muscle disease. It comes in many forms and can affect adults and children. Though there's no known cure for muscular dystrophy, specialists at Nemours help kids improve their muscle and joint function in order to slow the condition's progress.
Our muscular dystrophy programs are certified and approved by the Muscular Dystrophy Association (MDA). With access to the most advanced technologies, therapies and medications for muscular dystrophy available, your child will receive comprehensive care delivered by compassionate Nemours doctors, nurses and therapists who treat every child as they would their own.
Nemours muscular dystrophy treatment programs use a coordinated approach to help the best ways to treat your child’s individual condition.
That means our team includes experts in:
- orthopedics (bones and joints)
- pulmonology (lungs)
- neurology (brain, spine and nerves)
- genetics (DNA that determines heredity)
- physical and occupational therapy (improving muscle performance and motor skills)
- cardiology (heart)
- nutrition (help for kids with trouble eating)
- psychology (behavioral and mental health)
Together, we work as a team to give every child with muscular dystrophy the best possible care and quality of life.
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
- Patient Presents Without Legal Guardian (PDF)
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Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
The Muscular Dystrophy Program at Nemours/Alfred I. duPont Hospital for Children is the only one of its kind in Delaware. Approved by the Muscular Dystrophy Association (MDA), our program brings together two important elements to care for kids who have neuromuscular diseases like MD:
- the latest, most promising, most advanced techniques, medications, and therapies
- a caring, compassionate, family-centered approach focused on treating every child in our care as our own
Our Nemours specialists, nurses, and support people know it's frightening to face muscular dystrophy. And under our care, neither your child nor your family will face it alone. Our staff will be with you every step of the way, doing whatever it takes to help your child preserve as much muscle functioning as possible, for as long as possible.
Neuromuscular disorders like muscular dystrophy come in many forms, each with its own symptoms and challenges.
Our multidisciplinary team of neuromuscular experts provides compassionate, family-friendly care for kids with:
- Becker muscular dystrophy
- Carnitine deficiency
- central core disease
- Charcot Marie Tooth
- congenital muscular dystrophy
- distal muscular dystrophy
- Duchenne muscular dystrophy
- Emery-Dreifuss muscular dystrophy
- facioscapulohumeral muscular dystrophy
- fascioscapular humeral muscular dystrophy
- Friedreich's ataxia
- hyper and hypo kalemic periodic paralysis
- inclusion body myositis
- limb-girdle muscular dystrophy
- McArdle's disease
- myasthenia gravis
- myotonia congenital
- myotonic dystrophy
- myotubular myopathy
- nemaline myopathy
- ocular muscular dystrophy
- oculopharyngeal muscular dystrophy
- paramyotonia congenital
- Pompe disease
- spinal muscular atrophy
No matter what kind of neuromuscular disease your child has, we have one simple goal: To give your child the best chance to be a child.
To help children with muscular dystrophy experience and have the ability to do more independently, we offer highly specialized services that include:
- Speech therapy evaluation and treatment
- Occupational therapy evaluation and treatment
- Physical therapy evaluation and treatment
- Rehabilitation therapy evaluation and treatment
- Hearing tests
- Spasticity (muscle stiffness or spasms) evaluation and treatment
- On-site wheelchair, splint, and repair clinic
- Assistive technology
- Gait analysis
Our Nemours specialists and researchers are always working on new developments to make life easier for kids with muscular dystrophy (MD) and other neuromuscular disorders. Some of these life-changing discoveries and innovations are coming out of our:
Center for Orthopedics Research and Development (CORD), which is involved in researching and developing devices that help children with neuromuscular disabilities and orthopedic disorders, including MD.
Pediatric Engineering Research Lab (PERL), where our dedicated researchers are helping to develop amazing new robotic technologies, devices, and therapies that can dramatically change the lives of kids with MD and other disorders. One of these projects, the Wilmington Robotic EXoskeleton (WREX), amplifies the strength of children with weakened arm muscles. With the help of this device, kids who otherwise could barely move their arms and hands can do the little things (like brushing their hair and using a spoon) that matter a lot.