Behind every MDA Muscle Walk Team is a story.
Sometimes it’s a grandparent walking in support of a grandson recently diagnosed with Duchenne muscular dystrophy. Other times it’s a group of classmates walking to help raise funds for their friend to attend MDA Summer Camp. And in some instances it’s someone who knows nothing about muscular dystrophy but wants to do something positive to help others.
For siblings Olivia and Steven Sosa, participating in their local Muscle Walk was a way to create awareness for and fight the terrible disease that has slowly robbed Steven of his physical strength.
“I was around 19 or 20 years old when I noticed that my body was starting to be affected,” shares Steven, who lives with limb girdle muscular dystrophy type 2B.
Since his diagnosis, Steven’s condition has progressed.
“Steven had a cold that led to pneumonia, which led to him moving to an assisted living home. He has been in assisted living for about a year, but prior to that he lived with our dad,” says younger sister Olivia.
“We’re really close so it’s been hard to watch him struggle as the disease advances, but I always try to stay positive,” shares Olivia.
Part of that positivity has come through creating awareness about the realities of living with muscular dystrophy.
Although the family is new to MDA, with Olivia learning about the organization only briefly before she and Steven participated in their local Muscle Walk this past fall, they jumped into the organization head first.
“We found out about MDA just a little bit before our Muscle Walk. I emailed the local MDA office about resources for Steven and we began talking and I was able to get my family involved in Muscle Walk,” shares Olivia.
“Since being in assisted living Steven hadn’t been outside for about a year so he was really happy to participate in the Muscle Walk,” says Olivia.
After getting familiar with the Muscle Walk course and acquainting himself with the MDA staff, Steven officially kicked off the event by performing the ribbon cutting.
“Steven was really happy to be there. He wants to go to every MDA event he can,” shares Olivia.
Prior to his first Muscle Walk Steven helped create a video for MDA, candidly sharing what life can really be life for a person who lives with muscular dystrophy.
“It’s been a really rough, rough battle and life seems to be unfair, but that’s life and I’m not going to throw my gloves in yet,” says Steven.
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