150 walk for cystic fibrosis funds

May 22, 2017 at 12:05a.m.

BOARDMAN

With her petite frame and bright smile, Chrissy Falleti doesn’t look like someone who’s been in a fight every day of her life.

The same goes for Ryan O’Nesti, whose slim build and happy-go-lucky attitude are more friendly than fearsome.

But don’t be fooled by their appearances. Falleti and O’Nesti are fighters, alright. Both diagnosed as infants with cystic fibrosis, they’ve been fighting the disease all their lives and are proud to call themselves survivors.

“I travel; I work; I’ve been able to do everything I’ve wanted to do,” said O’Nesti, of Hubbard. “I’m 31, and I’m not stopping. I can see myself living a full life.”

Falleti, 41, of Liberty, was active in gymnastics, soccer and cheerleading while growing up and now works as a teacher in Niles.

“She’s going strong,” said her mother, Colleen Novosel. “She’s always been our little dynamo.”

Falleti and O’Nesti were among some 150 people who participated Sunday afternoon in the Northern Ohio Chapter of the CF Foundation’s Mahoning/Trumbull County Great Strides walk in Boardman Township Park. Funds raised from the event will go to the CF Foundation to be used toward research and, hopefully, a cure.

“There has been a lot of progress made in recent years,” said Leslie Schurman, development manager of the CF Foundation’s Northern Ohio Chapter. “They say that maybe within a decade, there might be a cure.”

Cystic fibrosis is a progressive, genetic disease that causes a buildup of thick mucus in the lungs, pancreas and other organs. The mucus clogs airways and traps bacteria, causing persistent infections and lung damage. Ultimately, it can lead to respiratory failure. There is no known cure.

Fifty years ago, most children with CF didn’t live long enough to attend elementary school, Schurman said. But with advances in treatment, people are now living into their 30s and 40s.

Because the number of affected people is relatively low compared with other diseases, there isn’t as much emphasis put on working toward a cure, Schurman said, noting that there are about 30,000 cases nationwide, including about 1,000 in Ohio. That’s why events such as the Great Strides walk are so important, she said.

Schurman said similar walks took place at 450 sites across the country during May, which is Cystic Fibrosis Awareness Month. The goal of the walk in Boardman was to raise $63,000.

Falleti said both parents must be carriers of the CF gene for it to be passed along to a child, although that doesn’t mean every child will get it. Her two younger siblings, Melissa and Ed, are CF-free, she said.

“And they both have three kids, and none of the kids have it, either,” she said.

Falleti said she participated in a clinical trial for a new medication that affects the mutation of the disease, and has been taking the medication since 2013.

“It’s really made a difference in my life,” she said.

Falleti credited her parents with ensuring that she lived an active lifestyle growing up, and making sure she kept up with her treatments. Now, her husband, Joe, has taken on the mantle of keeping her going.

O’Nesti said he can’t recall how old he was when he realized he has the potentially debilitating disease.

“I knew I had something, but everything was just my routine,” he said. “It was my life. I didn’t know any better.”

Like Falleti, O’Nesti said he strives to maintain a healthy lifestyle and is happy to be in good health.

“He’s always been very compliant with his therapy,” said his mother, Kathy. “Some kids kind of brushed it off like they didn’t need it, but Ryan always stuck with it.”

Ryan said his treatment sometimes includes stays in the hospital, where he’s connected to an IV of antibiotics to help clear the infection from his lungs.

“Every CF patient has been in the hospital at some point,” he said, noting that some require stays of longer than a month. “I’m usually in for two weeks and done.”

Great Strides is a national campaign to support the mission of the CF Foundation, which is to find a cure for CF and to provide all people with the disease the opportunity to lead full, productive lives.