As a 7-year-old back in 2008, Ryan Karlin was like most boys his age. He enjoyed playing soccer and spending time with his family. But in April of that year, Ryan was diagnosed with Duchenne muscular dystrophy, a genetic disease that causes the progressive loss of muscle mass.
Usually by age 12, most people who have the disease lose the ability to walk. Today, Ryan is 13 and walking tall as he and his family go the extra mile to raise awareness about the disease.
“We have a charity called Rally for Ryan and last year was our seventh year. We surpassed $1 million in donations since we started,” said Ryan’s father, Marty Karlin.
“Rally for Ryan is for muscular dystrophy for me, and other kids like me. All the money goes to research for kids just like me,” added Ryan.
It’s these efforts that led to the Muscular Dystrophy Association to name Ryan as the 2016 MDA Illinois Goodwill Ambassador.
“When we were looking at who to select for this year, they were an obvious choice. They will come to any event, share their personal story, and they really have a great way to engage our sponsors and the community in general to rally behind the Muscular Dystrophy Association,” said Ellen Sanders, Business Development Director for Northern Illinois at the Muscular Dystrophy Association.
Partnering with the MDA, Ryan and his family are working to make their vision for a cure a reality. This includes Ryan’s participation in a clinical trial targeted toward his specific disease.
“Part of his gene is missing for his dystrophin gene, and so what this drug, which is called SRP-4045 by Sarepta does, is it skips over the broken part of the gene and will actually start producing dystrophin, which is what he lacks and causes his muscles to degenerate,” said Marty Karlin.
Ryan’s trial involves traveling to Chicago for weekly infusions for a total of two years, but that won’t stop him from living a normal life.
“We got a lot of Blackhawk games, it doesn’t stop us. I’m sure we’ll go to a lot of Cub and White Sox games this summer. So, you’ve got to just keep living and not have the disease sort of run your life, you know?” added Marty.
And though there is currently no cure, Ryan plans to continue pursuing his dreams.
“When I grow up, I want to be a sports announcer for the Blackhawks,” said Ryan.
To help fund research, treatments and support, the Muscular Dystrophy Association is hosting the MDA Muscle Walk at Cantigny Park on May 21.
Naperville News 17’s Rachel Pierson reports.