Three Children with Cystic Fibrosis: ‘Meant To Be’ (continued)

Working Toward a Cure

Just 15 or 20 years ago, a child with cystic fibrosis rarely lived past his or her teenage years. As a result of new treatments and research, four years ago, the median survival age increased to 31.6, and today is 36.8 years.

Children’s CF Center is very active in research, with more than 20 research protocols underway at any one time.

“In part this is because we don’t have a good animal model of CF, so we have to study people with CF,” Dr. Accurso said. “Right now we’re working with two companies that basically treat the airway problem at a very fundamental level. We’re hoping that application of these treatments, should they pan out, will greatly decrease the lung problem.

“It’s very rewarding to work with  children with CF, because there are a lot of things as a physician that you can talk about that will help families understand what’s going on and what they need to do,” he said. “In addition, these families are terrific about stepping up to the plate and joining research trials, which allows us to make progress. The decision to join a research trial is not an easy one. Very often you might be the first person to receive a new treatment.”

For the Shkapichs, the decision to participate in research studies was easy.

“We do every research study we can,” Donna said. “We’ve done at least five or 10.”

Meg Anthony, a social worker in Children’s CF Center, helps make the decision to participate in trials easier for families by educating them about the protocols that might be a good fit for their child.    

“CF families are very educated and knowledgeable and well-versed on research,” Anthony said. “Many want to help out, and they do it to further understand their condition. I think there’s a general sense of community among families, kids, teens and adults that have CF. They really want to work to solve the problem.”

The ‘Charm’ Gene

“I can tell you, having known quite a few people with CF, they tend to be energetic and personable,” Dr. Accurso said. “There’s an old saying that the CF gene is the gene for charm.”

That certainly could apply to the Shkapich children.

“Anybody who meets Devin loves her,” Donna said. “She is going to be our actress. And she’s a very passionate person. She’s very fun because of that side of her.”

“Dalyn makes our family complete,” Dan said. “He’s full of life, all boy, all testosterone. But we see glimpses of kindness and generosity coming out of him.”

“Daphne is our baby; she can do no wrong,” Donna said. “She has us wrapped around her pinky.”

“The part that is scary is knowing that with CF, your health can change on a dime,” Dan said. “Even though the kids haven’t been hospitalized, we know it can change all of a sudden, that their health can dramatically decrease in a short amount of time. You try not to think about that, and thank the good Lord for every day that they have with you. Those are the blessings, the days that they are healthy. You hope that there will be more healthy days than unhealthy days.”

For now, the Shkapich family focuses on the positive and continues to fight CF in every way they can, including raising funds and awareness for the Cystic Fibrosis Foundation’s annual CF Walk. Their first team, Devin’s DeltaF508 Destroyers, is now the 3D Superheroes with the additional diagnoses. Hundreds of family members and friends have walked with them, together raising nearly $100,000.

“The family has done a remarkable job of taking care of the three children with CF,” Dr. Accurso said. “They have really done everything that’s required and that we know to do for kids this age.”

And the Shkapich family has a deep love and respect for Dr. Accurso.

“Devin hadn’t even been diagnosed yet with CF, and Dr. Accurso gave me his card with his home phone number and told me I could call him anytime, that he would be there. I’ve carried it for nine years; it just ripped apart,” Donna said.

“Dr. Accurso reminds me of the Mad Professor; he’s so incredibly bright,” Donna continued. “He’s amazing.”

“We live each day and enjoy it, because tomorrow it could all be gone,” Dan said.

“If we live each day like we were afraid that they’re not going to live, than we would lose out on a day. We just don’t really think about it.”

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