An elite team of disease detectives have a diagnosis and some hope for brothers, Carson and Chase.
Danny Miller is their dad. He says, “Carson and Chase have an ultra-rare mitochondrial condition called Mepan Syndrome. And, there’s only thirteen patients in the world that are known to have this condition right now.”
The boys, born two years apart, were each identified as having cerebral palsy.
Danny then discovered the Undiagnosed Diseases Network. It’s a nationwide team of specialists that utilized both medical and detective know-how to crack rare health conditions.
So far, one hundred thirty cases have been solved.
Dr. Jon Bernstein from the Stanford Center for Undiagnosed Diseases says, “They don’t really know
what it is that they’re fighting or what they’re up against. It’s like the unknown enemy so to speak.”
Carson and Chase went to Stanford for help where one of the network’s twelves clinics are located.
While the Millers are just at the beginning of their journey, receiving a diagnosis is a huge victory.
The Undiagnosed Diseases Network’s other clinic locations include Duke, Vanderbilt, and Harvard.
This is a federally funded program, so all care received by patients is completely free of charge.