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Cystic Fibrosis Fight Is Personal For Glenwood Family

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By Joe Foreman, Editor

For Adam and Myra Giaffoglione, the fight against Cystic Fibrosis (CF) is personal. It’s a fight the Glenwood couple is living each and every day with their two children.

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Jack, who just turned 5 last week, and Abigail, 3, were both born with the rare disease that can affect the lungs,  pancreas, liver, kidney and intestine. Adam and Myra both carry the mutated genes that can result in a child being born with CF. The disease doesn’t occur if only one parent has the gene. If both parents have the gene, there’s still only a 25 percent chance any child they have will be born with CF.

Adam and Myra were married in October 2011. In November, they learned they were having a child.

Myra had a problem-free pregnancy and an easy  delivery when Jack was born.

“When he was 10 days old, we got a call from our pediatrician,” Myra recalled. “He said, ‘Has anyone from Children’s Hospital called you, yet,?’ He told me to get a pen and paper and to sit down.”

The pediatrician conveyed that the results of some routine screenings taken at the hospital had come back and Jack definitely had Cystic Fibrosis, a disease Myra knew nothing about.

A couple days later, Adam, Myra and their parents met with the doctor in Omaha who explained the disease to them and the treatment Jack would be required to undergo.

CF is a disease that produces a stickier and heavier mucus, which can result in serious lung, respiratory and digestive issues. Jack was just 14 days old when he began taking pancreatic enzyme supplements.

“We opened the pills and sprinkled the enzyme pellets onto applesauce,” Myra said.

Because of the thick mucus, Jack also began chest therapy treaments at a young age to prevent build up and possible infections.

Adam and Myra had always wanted to have multiple children, but after Jack’s birth they reconsidered their family plan, knowing any child they have could be born with CF.

“We knew after Jack was born that any kid we have in the future was going to have a 25 percent chance of having CF,” Adam said. “We had long discussions and considered adoption, but in the end we knew that regardless of what we do, kids are still going to be born with Cystic Fibrosis.

“We knew we were capable of handling it and that we could be responsible parents. For a year and half, we had already been doing that with Jack.”

Eleven weeks into their pregnancy with Abigail, Adam and Myra learned their daughter would be born with CF.

They were ready and fully accepting of the news.

Like all children with CF, Jack and Abigail are at risk for unique germs and infections and require some special care.

They both take around 30 medications every day and are required to undergo 30-minute chest therapy sessions,that require them to be hooked up to a vest that shakes their mucus and helps move it along through their body. The medications cost $5,000 a month for each child, but are covered by insurance, fortunately.

The Giaffogliones are proactive in the care and treatment of their children. They’re strong supporters of the Cystic Fibrosis Foundation which has played a role in major breakthroughs taking place in the treatment of CF.

“When Jack was born, the life expectancy for a person with CF was 35. Today, only five years later, it’s 42,” Adam said. “Last year was the first time the majority of people living with CF were over the age of 18.”

Their support of the Cystic Fibrosis Foundation is the reason Adam and Myra are sponsoring two fund-raising events for the foundation Saturday, Aug. 5, in Glenwood.

A Super Hero 5K run and 1K walk is being held at 8:30 a.m. in conjunction with the fourth annual Brews For Breath event taking place on the evening of Aug. 5 at Glenwood’s Keg Creek Brewing Co.

Pre-registration for the run and walk can be made online at getmeregistered.com/CFSuperhero5K. The cost to participate is $15 for those who preregister online and $20 on the day of the event.

“Mini Superhero Dashes” for children are also planned for the event. The children’s races are free and no registration is required. The evening event at the brewery will take place from 7-10 p.m. Highlights will include music performed by Fair Deal (Adam’s band), food, craft beer and a raffle for several donated items.

Additional information about the events are available on the CF Superhero Fun Run and Brews For Breath Facebook event pages.

“Things are moving pretty rapidly with research and medications,” Myra said. “Progress is being made. Our ultimate goal is that Jack and Abigail live long and full lives with their own lungs.”