Living with UCMD

The story of Chelsea

When I was born there was something different about me. I was born with floppy hands and feet. My mom knew there was something wrong but the doctors just thought I had low muscle tone. I got diagnosed with Congenital Muscular Dystrophy when I was 8, but that was just a broad term meaning that I was born with a muscle disease. I walked until I was 10 and Had my spinal fusion due to my condition. I have been wheelchair bound since. I play power hockey and that is how I got in touch with another mom that had the same issue. She recommended that I contact the National Institutes of Health, I went to NIH last April and they finally gave me the diagnosis of Ullrich Congenital Muscular Dystrophy. I am so happy to finally have a name to what I have. I am literally one in a million.