Jyoti Bharadwaj of North Bethesda dreams of the day her son will run, jump or dive into a pool. But she knows that dream will never come true.
Her 14-year-old son, Iyan, was diagnosed with Duchenne Muscular Dystrophy, the most severe form of the progressive muscular weakness disease.
He attends Tilden Middle School in Rockville, moving about on a scooter. But it won’t be long before he moves to a wheelchair, according to his mother. Then the weakness will move from his lower to his upper body and then his heart.
Bharadwaj is on a mission to ensure that other children and their families don’t suffer the same fate.
There is no cure. But in the past few years, multiple therapies have become available or are under development to slow the progression of the disease.
Unfortunately, these medical breakthroughs must be administered by the time the child is, at most, five or six years old. When muscles stop working, that cannot be reversed, Bharadwaj explained.
That is why on Monday she addressed members of the Advisory Committee on Heritable Disorders in Newborns and Children and urged them to include screening for Duchenne Muscular Dystrophy for newborns.
This screening currently is available but needs to be included in the many screenings that newborns undergo, Bharadwaj said while speaking at the federal Health Resources and Services Administration in Rockville during a two-day meeting.
Their decision is not expected for several months.
