Myelin Disorders Program Contact number | 202-476-4975

Emily's Story

Emily’s Story: Solving the Mystery of Leukodystrophy

When Emily was 10 months old, her parents took her to the emergency department because she appeared to be in extreme abdominal pain

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The Myelin Disorders Program at Children's National Health System is a national leader in providing comprehensive clinical care, diagnostic testing and the most advanced treatments for inherited white matter diseases in more than 500 patient visits each year.

The Myelin Disorders Program takes a multidisciplinary approach to the diagnosis and treatment of inherited disorders of cerebral white matter, or leukodystrophies.

Myelin Disorders Program at Children’s National: Why Choose Us

Identifying the cause and type of a white matter disease can be challenging.  The Myelin Disorder Program provides integrated care by a team of neurologists, pediatricians, rehabilitation physicians, genetic counselors, and speech therapists, ensuring that children receive the best care and the most appropriate treatment. Since care and treatment may be dependent on the underlying cause of the white matter disorder, Children’s has several clinics devoted to ensuring top care.

Features of the Myelin Disorders Program include:

  • Expert Care – Our specialists are international leaders who have pioneered in the research and development of treatments for Myelin Disorders, used all over the world.
  • Personalized treatment – We create a personalized care plan based on the genetic makeup of your child.  We understand that all children are unique and require treatments the meet their unique needs.
  • Trial and Research – Our team of researchers and clinicians are devoted to the discovery of novel variations responsible for pediatric white matter disorders and to translate these findings into clinical treatments through extensive research, clinical trials, and studies.
  • Ongoing Care - Our team of specialists provides ongoing care throughout the diagnosis and treatment of your child’s condition while being treated in our program.

Emily's Story

Emily teaser image

In 2012, Emily Rose Wagner was born in Boston, and her parents were beyond thrilled to have their second child. The first few months after Emily was born were a dream come true for the entire family.

Emily's Story

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Children’s National sees children from around the Washington, DC, metropolitan region, nation, and world who need the kind of specialized expertise and child-focused care we offer.

Myelin Disorder Team at Children's

Our team is committed to providing the best and most compassionate clinical care.

Related Care Services

Pediatric specialists work closely to ensure an integrated approach to caring for each child and family.


At Children’s National, our groundbreaking research is helping us advance the field while providing the best available care to children.