PirateFest benefits children with Cystic Fibrosis

By Jill Clair Gentry / Baldwin People editor people@gulfcoastnewspapers.com
Posted 9/18/13

Anyone who has been to Happy Harbor's annual PirateFest knows it's a lot of fun — live music, comedy, poker, arts and crafts vendors — but attendees may not be aware of the good cause the event supports.

Every year, money raised from …

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PirateFest benefits children with Cystic Fibrosis

Posted

Anyone who has been to Happy Harbor's annual PirateFest knows it's a lot of fun — live music, comedy, poker, arts and crafts vendors — but attendees may not be aware of the good cause the event supports.

Every year, money raised from PirateFest is donated to the Cystic Fibrosis Foundation.

Cystic fibrosis is personal to the staff at Happy Harbor. One of its managers, Henry Bateman, has an almost 6-year-old son named Harrison with the genetic disorder.

When the event began, the Batemans asked the Specchio family, who own the restaurant, if part of the proceeds could benefit the Cystic Fibrosis Foundation. The foundation funds research seeking to find ways to control and ultimately cure cystic fibrosis. The Specchios agreed, and the event raises $8,000 to $13,000 for the foundation every year.

“They've been very supportive,” says Henry's wife Angela, who is the recreation coordinator for the City of Orange Beach. “We just really appreciate them for supporting us and allowing us to fundraise.”

What is Cystic Fibrosis?

Cystic Fibrosis (CF) is an inherited chronic disease that causes the body to produce unusually thick, sticky mucus. This mucus clogs the lungs and leads to lung infections and obstructs the pancreas, stopping natural enzymes from helping the body break down and absorb food.

It affects about 30,000 children and adults in the United States and 70,000 worldwide. Angela says she knows of about eight children with CF in Baldwin County.

“Kids with CF can't process food as well, so Harrison has to take enzymes with every meal and snack,” Angela says. “To help his lungs stay in good shape, we do between six and eight breathing treatments per day, and he wears a vibrating vest for physical therapy — vibrations help loosen the mucus in his lungs.”

Angela and Henry found out their son had CF when Angela was six months into her pregnancy.

“They saw something on the ultrasound and that's when we found out he had CF,” she says. “There was a blockage in his intestines. As soon as he was born, he had to have surgery, and then he had to stay in the NICU — he was born Oct. 7, and we brought him home from the hospital in December.”

Angela says Harrison is a fun, energetic child who loves to run, play and spend time around people.

“He is just a blessing to us,” she says. Although the Batemans work hard to raise funding for CF research, hoping there will one day be a cure, Angela says having a child with CF has helped her focus only on what is important in life.

“Just because of the time you have to spend treating, it really has helped us prioritize in our daily lives — we have to decide what's important and what we can cut out,” she says. “You kind of have to slow down.”

The Cystic Fibrosis Foundation

In the 1950s, the life expectancy for an infant diagnosed with CF was just a few years. The Cystic Fibrosis Foundation began in 1955 and has been the driving force behind research since then.

Because of pharmaceutical and treatment advances, many people with CF can now expect to live well into their 30s and 40s.

And exciting new clinical drug trials are showing positive results in mitigating the symptoms of CF, Angela says.

“The foundation means a lot to our family because it is the major contributor to organizations and scientists who are working on the cure,” she says. “And they get no funding from federal government. So just by coming to PirateFest, you get to come listen to great music from regional acts, hear comedy and laugh — and by doing that, you're raising money that directly impacts the lives of people with CF.”


If you go

WHAT: Piratefest

WHERE: Happy Harbor, 27212 Marina Road, Orange Beach

WHEN: Sept. 20-22

ENTERTAINMENT: Music, comedy, arts and crafts vendors, food, kids activities, poker tournament, chili cook off, silent auction

CAUSE: Cystic Fibrosis Foundation