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Advances in cystic fibrosis mean kids like Elliot can live long, healthy lives

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SALT LAKE CITY— Alta and Mike Hales prepped their spunky, tow-headed 7-year-old, Elliot, for his daily breathing treatments which involve strapping on a vest that inflates and vibrates to break up the mucus in his chest. It wasn't the life they imagined for their son, who has cystic fibrosis, but they've found hope and a "new normal" that's keeping him healthy.

The day the doctor called with the diagnosis was devastating. CF is an inherited, life-threatening disorder that damages the lungs and digestive system and it used to mean an early death sentence.

"I just remember sitting on my stairs just bawling because all I knew was that my son's life now had an expectancy," said Alta Hales. "It wasn't to be an old man — it had a limit."

The Hales faced an unknown future and embraced it. Alta serves on the Cystic Fibrosis Advisory Board. Their family formed a team of volunteers called "Elliot's Angels" that participate in a bike ride to raise money and awareness of the disease. Their hard work, along with like-minded CF families, doctors and scientists, is paying off.

"I think what we're seeing is the tip of the iceberg as far as our ability to effect change in CF," said Elliot's doctor, Dr. Barbara Chatfield, a pulmonologist at Primary Children's Hospital.

Now, all infants in the U.S. are screened for CF. And just this month, an advisory committee to the FDA recommended approving a new drug called Orkambi, which targets the underlying cause of the disease. It can help people 12 and older with two copies of the most common mutation. This could allow some patients with CF to manage it like diabetes, doctors say, and live long, healthy lives.

I just remember sitting on my stairs just bawling because all I knew was that my son's life now had an expectancy. It wasn't to be an old man — it had a limit.

–Alta Hales, Elliot's mother

Still, it's a nasty disease. Managing it takes work. Keeping Elliot's lungs infection-free is a daily battle.

"Our mucus is like molasses or syrup and his is like peanut butter," said Alta. "It just gets stuck, and if it stays there for too long, bacteria can start growing on it."

He takes up to 20 pills a day. CF affects his body's ability to break down fats and proteins. He gets extra nutrients through his feeding tube at night. Just one small package of the mixture has 375 calories and 17 grams of fat.

Elliot played with Legos while the breathing treatment worked its magic. The Hales keep working toward a cure. And doctors say it's possible.

"My hope for Elliot is that he will outlive me and he will become a father and a grandfather and enjoy the life we hoped he would," Hales said.

For the love of Elliot, these parents, and others like them, are making strides for everyone.

Dr. Chatfield said, "Certainly a healthy, young person should plan on staying healthy and growing up and growing old."

If you'd like to donate or join the Elliot's Angels team, visit the Salt Lake City CF Cycle for Life 2015.


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Heather Simonsen


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