Rare Diseases

Boy Receives New Treatment for Rare Disease

Four-year-old Ely Bowman knows a thing or two about airplanes. Every two weeks, he and his family flew from Irvine to Ohio for a clinical trial for Batten’s Disease, a rare nerve disorder.

Now he and his family can drive to Children’s Hospital in Orange for enzyme transfusion treatment, which was recently approved by the Food and Drug Administration.

Bowman’s older brother Titus died from the disease in 2016. There is no known cure.