The Muscular Dystrophy Association Program at Floating Hospital for Children provides world-class care and ongoing management of Duchenne muscular dystrophy, Becker muscular dystrophy and spinal muscular dystrophy, as well as other neuromuscular disorders for which the Muscular Dystrophy Association (MDA) sponsors treatment. Supported in part by the MDA of Boston, our program also provides personalized care to children and adolescents with other muscular and neurologic disorders that cause long-term disabilities.
Outstanding, Personalized Care for Children with Muscular Dystrophy
The best treatment approach for children with a complex disorder like muscular dystrophy is care that is individualized and carefully coordinated. To fulfill that goal, our physiatrists and our team, including nurses and support staff, get to know your child well. Understanding your child’s total health and unique needs begins with an in-depth evaluation at our office located at Floating Hospital on the main campus of Tufts Medical Center in Boston.
Based on this evaluation, we create a personalized care plan, which ensures your child receives the right combination of therapies and long-term management strategies. Muscular dystrophy is a very complex disorder, and when needed, we include specialized treatment from our colleagues in areas such as Pediatric Orthopaedics, Neurology, Neurosurgery, Physical Therapy, Occupational Therapy and Psychiatry.
Thoughtfully Managed Care for Your Child by Expert Physiatrists
Not only are our physiatrists and nurses fully experienced and highly trained in caring for children with muscular dystrophy and complex disabilities, but they also have a natural affinity for treating every child with warmth, kindness and compassion.
Our program is led by Harry C. Webster, MD, FAAP, Chief of Pediatric Physiatry, is one of Boston’s most experienced doctors specializing in the treatment of muscular dystrophy and related disorders. Over a more than 30-year career, he has dedicated his practice, training and research to providing care to children with complex disabilities.
Another priority of our program is providing continuous support and education for you and your family as you navigate the uncertainties and challenges of caring for a child with muscular dystrophy. Lucia Bastianelli, RN, MSN, CPNP and our staff can help you in numerous ways, including sharing treatment options, explaining how to care for your child at home and advocating for your child with teachers and school officials.
Additionally, on most Thursdays, a representative from the MDA of Boston provides in-depth information from the organization’s vast resources, including topics such as finding support groups in your community, evaluating summer camps for children with disabilities and how to connect with other families who care for a child with muscular dystrophy or related disorders.
Learn more about the support and education we offer as part of our dedication to caring for both children and their families.
Although there is no cure for muscular dystrophy and similar disorders, most patients have an amazing capacity to realize their dreams and goals. The range of therapies we recommend for your child as part of his or her care plan depends on his or her needs and may include:
We also can recommend and refer you to accomplished colleagues in Pediatric Orthopaedics if your child requires surgery for a problem caused by muscular dystrophy or specialists in Psychiatry if your child’s condition causes emotional or psychosocial difficulties.
Although physiatry care naturally begins with addressing your child’s physical limitations, our treatment approach centers on planning and helping with every aspect of your child’s health and well-being.
Because Floating Hospital for Children is part of Tufts Medical Center, we can provide lifelong care for your child. This ensures a smooth transition, including the reassurance of friendly and familiar faces, when your child needs specialized adult care.
And because we understand the strain frequent travel can place on you and your child, we work with doctors and other specialists in your community to coordinate optimal rehabilitation and long-term planning.