Viral Picture: Girl with Pompe disease

SHE SAID: “I was born with a genetic disorder called Pompe disease. Pompe disease is a form of muscular dystrophy. The lack of enzymes causes glycogen buildup which deteriorates the muscles. I was diagnosed at 12 years old. By the time I turned 18 I could no longer walk. Before attending college I got really sick and flatlined in the hospital.
I survived, of course, changing my plans of going to college to earn my degree online. I have a bachelor degree in psychology. Three years ago I was hospitalized for severe dehydration, resulting in me using a breathing machine 24/7 and being bedridden. I’m now 27 receiving treatment every two weeks for Pompe that I started a year ago. I have about 20% muscle left in my body which means I need assistance with everything. But I’m a college graduate, published author of six books and is currently working on my dream to write films.” – Keyana Sullivan

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