One Chicago Family’s Fight Against An Ultra Rare Disease

When you hear about “rare” diseases, it can be easy to think we’re talking about a one-in-a-million case. But actually, the “rare” is far more common than you think. About 1 in 10 Americans suffer from a rare disease. But because there are so many different kinds, getting diagnosed or even treated can be a nightmare of doctor appointments, long wait times on phone calls, and jumping through hoops. That was the case for young Charlie Sims. At just four years old, his parents noticed their son was exhibiting behavioral changes that compelled them to consult a doctor. Now seven years old, Charlie is the first and only person to receive therapy for his rare disease. Reset sits down with his parents, Matt and Leigh Sims, and RUSH pediatric neurologist Dr. Elizabeth Berry-Kravis to find out more about his story, and the importance of advocating for yourself and your family when seeking medical care. For a full archive of Reset interviews, head over to wbez.org/reset.