Ryan's Story

My older brother Ryan and I are very close. When we were younger we’d dig for worms in the back yard and play pretend pirates at the playground, steering the wheel of the ship together. He used to fall a lot, but I didn’t think anything of it.

Ryan fell more often as we got older. We thought he had Cerebral Palsy, but over the years, his disability got worse. Doctors at Children’s National Hospital diagnosed him in 2019 with a very rare disease called MPAN. It is one of a group of inherited neurologic disorders called NBIA (neurodegeneration with brain iron accumulation). That means that iron in his brain is causing it to deteriorate. He might lose the ability to walk, swallow or see. This was a shock. The thought of someone I love dying had never occurred to me before.

Ryan is 17 now and life is pretty normal. He loves math and science and football. We go to school and eat dinner and tell each other bad jokes and talk about things. He does lots of physical therapy. He is strong and brave and has a very positive attitude despite his disability. I try to be like that, too, but sometimes I feel like I might burst.

Our family has worked to raise money for research so doctors at Children’s National can find a cure for MPAN. There’s barely any information available about the disorder because so few people have it, but I know there’s a cure out there. When the doctors at Children’s National find it, I’ll thank them for saving my brother—and the other children around the world who have the same disability.