The parents of a Naperville boy with Duchenne muscular dystrophy are hoping sales of a product they invented and recently launched will help provide research funds and renewed hope for him and others with the rare disorder.
Marty and Geri Karlin have hosted fundraisers for the past four years to help their son, Ryan, 10, whose inherited condition afflicts about one of every 3,600 male infants. It is caused by a defective gene in a blood protein called dystrophin, causing muscle mass to be replaced by fat tissue. Health officials say the average life expectancy of those with DMD is 25 years.
The Karlins wanted to do more, even though they'd raised an average of $150,000 per year, and invented ShtankOut, a collectible plush toy filled with silica gel beads that comes in five different fruit scents and absorbs odors inside a child's gym bag or school locker.
"Marty and Geri came up with an idea that hasn't been done," said Mary Kay Russell, a product spokesperson. "There's no toy like this in the market."
Marty Karlin explained the genesis of the idea.
"Last year, I opened my daughter's gym bag with her ballet slippers and said to myself, 'man, this bag shtinks,''" he said.. "My daughter then looked at me and said she'd never heard that word before."
Karlin wrote a one-page summary of his product idea and showed it to his three teenage daughters and their friends.
"Turns out the kids loved 'shtank' because they think they're saying a naughty word, especially the littlest ones," Karlin said.
He told his children he would become a toy entrepreneur only if the profits went to benefit Duchenne muscular dystrophy. An electrical engineer by training, Karlin previously owned a local technology firm. He and his wife, a registered nurse, now operate their ShtankOut company full time.
After introducing the product at a toy industry trade show in February, ShtankOut now is available at three Naperville Walgreens stores and other retailers, including Amazon.com.
"So far, we've sold about 2,000 units in the one month it's been out, and that's about $1,000 for DMD research," said Karlin. "Here's a toy that's cute and is for a good cause."
For Ryan, a typical day begins with him taking medications before attending White Eagle Elementary School with his fifth grade classmates. After school, he plays video games and likes to snack on cucumber slices.
"He stands up when he plays his video games," his father said. "In my mind, I'm thinking the reason he doesn't sit down to play games is maybe because he knows some day he won't be able to get up."
Karlin said he and his wife are hoping new DMD treatments will be approved, like a new gene therapy drug called eteplirsen that currently is in clinical trials. According to Sarepta Therapeutics, of Cambridge, Mass., eteplirsen may partially restore the deficient protein in DMD, slowing the disease and improving the quality of life for some patients.
"It's difficult for me and for Geri to think too far ahead about what challenges are coming for Ryan and our family," Karlin said. "I keep holding out hope that medical science is going to change the outcome."
