Good Cause: Rally for Ryan gala to fund Duchenne research
By Michelle Linn-Gust For The Sun November 12, 2012 6:28PM
Sisters Lauren, Cassidy, and Brittany walk on the beach in Florida with their younger brother Ryan who has Duchenne Muscular Dystrophy. | Submitted
At A Glance
What: Rally for Ryan gala to raise funds to find a cure for Duchenne Muscular Dystrophy.
Who: The gala will feature former Chicago Bears Alex Brown and Desmon Howard, and “Chicago Fire” and “Sex in the City” actor David Eigenberg
Where: White Eagle Golf Club, Naperville
When: 6:30 p.m. Saturday, Nov. 17
On the web: www.rallyforryan.org
Updated: December 15, 2012 6:10AM
Marty and Geri Karlin made a choice after their son Ryan was diagnosed with Duchenne Muscular Dystrophy in kindergarten. To keep Ryan out of a wheelchair as long as possible, he takes steroids daily to cut down on inflammation and help his muscles rebuild the protein they can’t do on their own. There was a tradeoff though; by doing the steroids, Ryan at age 10 suffers from osteoporosis and his growth has been stunted.
One of Ryan’s best friends is Sharon Moody’s son Adam. Together they are an oddity.
“Adam is probably the tallest kid in their fifth grade (at White Eagle Elementary School),” Marty said.
While Adam looks like he will top six feet when he is fully grown, Ryan will be lucky to break five feet.
But it is Adam who carries Ryan out of the car when Marty or Geri picks them up from school. It is Adam who runs around with Ryan, when Ryan can, as if he’s just another kid. And it is Adam who protects Ryan.
“Our kids have learned compassion and caring,” said Moody, a Rally for Ryan board member and mother of another son besides Adam. “Our kids have learned how to help people not 100 percent able bodied.”
Ryan’s future is unknown. There is no cure for the disease that affects 1 in 3,500 boys and young men. Duchenne Muscular Dystrophy causes loss of muscle function and eventually loss of cardiac and respiratory function.
That’s why the Karlins started Rally for Ryan, a gala benefitting Duchenne research. This year’s fundraiser is Saturday and will feature former Chicago Bears Alex Brown and Desmon Howard, and “Chicago Fire” and “Sex in the City” actor David Eigenberg.
With no cure, the Karlins are doing everything they can to help their son have the best life possible while he can still walk. Ryan takes a regiment of vitamins, sleeps with braces on his legs, does physical therapy, and is starting to face the reality of his future.
During a Duchenne conference last summer, Ryan asked his father when he, too, would be in a wheelchair after seeing all the older boys in wheelchairs.
“I can’t lie to him,” Marty said. “I told him we don’t know what the future holds.”
Geri’s older brother Patrick died when he was 17 from Duchenne. Geri was just a few days from turning 7 years old when it happened.
“I don’t want Ryan to look at me one day and ask me ‘Why didn’t you let me play sports while I could?’”
Patrick was 8 years old when he could no longer walk.
That’s all the more reason for the Karlins to devote as much time as they can to their son.
Friend Steve Esposito realizes that, as much as Marty likes to golf, “Ryan comes first.” Esposito said that picking up Ryan from school every day would trump any golden tee.
The Karlins have the resources to help their son as much as possible; therefore, Rally for Ryan was created to find a cure for the disease rather than to raise funds for his care. They anticipate topping the $400,000 they raised at the event last year, with a little help from some local celebrities.
It isn’t just about banding together with people who want to help and lend their name, but those who have some understanding of what Duchenne can do, too.
Eigenberg, who grew up in Naperville and graduated from Naperville Central High School, is one such example.
While he is best known for his roles on the television shows “Chicago Fire” and “Sex in the City,” he also has a friend who lost a son to Duchenne before he and Eigenberg became friends.
“These things aren’t about me,” Eigenberg said. “It’s about being a service to help bring light and attention to the cause.”
While Eigenberg is in Chicago shooting “Chicago Fire,” his schedule happened to be open for the night of the event, making it easy for him to want to take part.
“It’s a devastating disease,” he said.