PATIENT JOURNEYS

"With DMD, we know what we are able to do, and we know how to push ourselves."

"I want to make sure that everybody knows that there is hope. Don’t give up on your kids."

"Let's not look at what they can't do. Let's look at what they can do and what they're going to do."

"I think it’s really important to go out and advocate for people with MPS because so many families that are impacted can’t be there to represent themselves."

"When I returned to church, people told me they never thought I was going to make it out of the hospital. But there I was. Alive. Another miracle."

"It's special to be rare. You can look at it as an affliction, but I'm special, I'm different, I'm not run-of-the-mill."

"This is the first time in my life I have total control. If I screw up, it's nobody՚s fault but mine. If I succeed, it's nobody's fault but mine."

"Now that I’m living by myself again, I’m focusing on me."

"Every morning you wake up and open your eyes, and for that first minute you don't remember ... then all of a sudden you do."

"I miss hiking all day ... I have an all-terrain wheelchair, but that's not the same as walking."

"This disease forces you to know your own body ... and to appreciate how fragile life is."

“I dreamed of the little things, like working in the yard, enjoying the taste of food and being able to go for a walk. My dreams have come true. I feel blessed.”