ELMHURST – Thanks to a new drug, 16-year-old Dylan Roesch, spends a lot less time every day managing his cystic fibrosis and a whole lot more time playing sports, strumming his guitar and just enjoying being a teenager.
"Before, every morning I'd have to wake up and take 15 pills," Dylan said, describing just one of his daily routines before he began taking Kalydeco.
Three years after Dylan was born, he was diagnosed with cystic fibrosis, a genetic disease that affects the lungs and digestive system. The Cystic Fibrosis Foundation explains that a defective gene results in the body producing thick, sticky mucus that clogs the lungs and obstructs the pancreas, stopping natural enzymes from helping the body break down food.
When Dylan's father, Dan Roesch, president of Larry Roesch Auto Group in Elmhurst and Bensenville, heard Dylan's diagnosis, he worried about what future his son might have since there is no cure for cystic fibrosis.
The next 12 years of Dylan's life were filled with many medications, daily treatments with a nebulizer, hospital visits that often lasted weeks and a feeding tube.
In just two years, Dylan's hospital visits, which he admits were starting to get scary, have been replaced with anticipation about his next Hinsdale Central junior varsity volleyball game.
Thanks to Kalydeco, a pill Dylan began taking twice a day in 2012, the Hinsdale teen has been able to reduce his medication by 80 percent. His feeding tube is gone, his lungs function is above 90 percent, and he has plenty of time to worry about what he wants to do with his future.
"My day-to-day worries changed a lot," Dylan said.
Dylan's laundry list of hobbies and interests range from playing guitar at School of Rock in Hinsdale to motocross racing, snowboarding and, of course, sharing in the family passion for cars.
"He loves cars," his father said with a tone of pride in his voice.
Kalydeco improves the defective protein Dylan has. Specifically it only works in people with the G551D mutation like Dylan, but the Cystic Fibrosis Foundation continues to fund research to find treatments for people with other defective genes and ultimately, a cure.
On May 9, during Cystic Fibrosis Awareness Month, the foundation hosted its 10th annual Casino Chicago event at the Swiss˘tel in Chicago. It raised nearly $400,000, setting a new record. Dan Roesch has co-chaired the event since its inception, and while he's forever thankful for the opportunity Dylan was granted as one of just 1,200 patients who qualified to take Kalydeco, he is dedicated to continue giving back to the foundation until a cure is found.
"It's just cool that they're trying to help out," Dylan said of the fundraiser that drew in more than 700 guests.
While he's privileged to qualify for Kalydeco, Dylan realizes about 96 percent of those with cystic fibrosis don't.
"We need to get it approved to all other genes," Dylan said.
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For more information about Cystic Fibrosis Foundation or Kalydeco, visit www.cff.org.