Naperville mom makes every moment count
Seven-year-old Ryan Karlin is a boisterous, funny kid who is always happy and cracking jokes.
He loves to swim and play golf, and says one day he hopes to be the best soccer player in the world.
But Ryan's dream will probably never come true. By the time he is 12, the likelihood is he'll be in a wheelchair, and he may not live beyond his 20s. Ryan has Duchenne muscular dystrophy, a muscle-wasting disease that affects one in 3,500 boys.
Ryan, however, does have something special on his side. Positive parents who will do anything they can to help him and other children like him.
"As parents, we can either do nothing and hope that someone else will do something, or look for treatments to keep him walking until he is 16 or 17, by which time there may be a cure," said Geri Karlin, Ryan's mother.
Geri is no stranger to the terrible disease. Her brother died of it when he was just 17.
"In those days we didn't know much about DMD," she said.
The disease only affects boys, although girls can be carriers. Geri said she was tested, but not thought to be a carrier. She went on to have three healthy daughters before giving birth to Ryan, now a second-grader at White Eagle Elementary School.
"Ryan always ran a little slower than the other kids," she said. "When he started to play hockey at school, I noticed he couldn't get up if he fell over. We took him to a doctor who gave him a blood test and the next day we were told he had DMD. I was shocked and horrified."
Geri, a former nurse, explained that patients do not produce enough dystrophin, an essential protein that is critical to the structural stability of skeletal and heart muscles.
"It breaks my heart that by 12 he could be in a wheelchair," she said. "It is so hard to believe when I see my beautiful little boy running around."
Ryan doesn't complain when he has to take nasty-tasting medicine and sleep with his feet in special ankle braces. He enjoys healthy organic foods, but does have a weakness for Portillo's chocolate cake.
"We have to buy the medication he needs from the U.K.," Geri said. "Deflazacort is perfectly safe with fewer side effects than Prednazone, but not approved by the FDA."
Geri and her husband Marty are so determined to do everything they can for Ryan that they have founded their own nonprofit, Rally for Ryan, with a committee of supportive friends. They are working alongside the Muscular Dystrophy Association and Parent Project Muscular Dystrophy.
Their first event, a cocktail party and raffle, takes place Friday at White Eagle Golf Club. Naperville Mayor A. George Pradel will be in attendance, Dolly McCarthy of NCTV17 will emcee and all proceeds will go directly to help medical research. Tickets are $100.
"I'm putting in $100,000 of my own money, but even what we have won't be enough," said Marty. "I want people to see I'm not just asking them for money, I'm prepared to contribute too."
"Ryan has some limitations, but they don't define him," said Geri. "I feel so blessed that we all have each other. I don't want my girls to have to deal with this in the future and I don't want to have to go through it again with a grandchild. When it comes down to it, all we have is time with our children. All the rest is fluff. We have to make a life out of what we have today."
To book tickets or for more information visit www.rallyforryan.org or call 630-922-6049.
Hilary Decent would like to hear your stories about women in the community. E-mail her at hilarydecent@yahoo.co.uk.
