jc_cystic fibrosis

DREW HARMON | The Edmond Sun Ryan and Alyssa Siler are the chairs of the 2007 Breath of Life gala. Their daughter, Hayden, 15 months, has cystic fibrosis.

Alyssa Siler knows that money buys science and science protects life.

She and her husband Ryan Siler of Edmond are the co-chairs of the Oct. 12 Breath of Life Gala benefiting the Cystic Fibrosis Foundation. Their only child, 15-month-old Hayden, was born with cystic fibrosis, an inherited chronic disease that damages the lungs and digestive system of about 30,000 children and adults in the United States.

“It is so vitally important with cystic fibrosis that we do everything we possibly can to raise the funds for medical research,” said Alyssa Siler, a stay-at-home mom. She and Ryan keep busy volunteering for the CF Foundation, and Siler works in sales.

“For me, awareness is the main thing, but also to have fun and celebrate the lives of people (who) have CF right now, and to show people the joy that we share in fighting this disease,” Ryan Siler said.

He wants people to understand what CF is and what can be done to cure it. CF causes the body to produce a thick, sticky mucus that clogs the lungs and hinders the pancreas and halts natural enzymes from helping the body digest and absorb food.

Hayden is given synthetic enzymes every time she eats. She receives two daily breathing treatments. And she wears an oscillating vest that shakes her lungs twice a day to break up the mucus.

“The moment she was born, doctors noticed her abdomen was distended,” Alyssa said.

Surgery corrected Hayden’s intestinal obstruction, but her parents brought Hayden home from the hospital knowing their daughter has a life-threatening disease. In recent months, hospitals have been compelled by law to test all newborns for CF, Alyssa said.

“It makes all the difference in the world if they can get all the medications they need right off the bat rather than waiting until they’re 4 years old and they’re sick all the time,” she said.

Of the 350 young people in Oklahoma with CF, 250 of them have been added to the predicted median survival age of 37, according to the Cystic Fibrosis Foundation. Forty-three percent of CF patients in the state are older than 18.

New therapies since 2003 have added nearly five years to the median survival age. Many patients are participating in clinical trials. Support from the CF Foundation has made many of these clinical trials possible.

“Every drug in what they call the medical pipeline is funded by the foundation and the money that we raise,” Alyssa said. “It’s a disease they are so incredibly close to a cure.”

Alyssa said Hayden’s future depends on biomedical research set on finding a cure for CF. And she sees “tons” of strength and hope in her daughter — characteristics that will serve Hayden well while battling CF. Hayden is energetic, happy and driven with golden-brown hair and hazel eyes.

“I can tell when she gets older she’s not going to be held back by this disease at all. She’s extremely strong,” Alyssa said.

jcoburn@edmondsun.com | 341-2121, ext. 114

The Details

The Sooner/Oklahoma City Chapter of the Cystic Fibrosis Foundation has announced that Henry Diltz will be its special guest at the Breath of Life Gala to benefit the Cystic Fibrosis Foundation. His work will be featured in the live auction portion of the evening. The event is set for 6 p.m. Oct. 12 at National Cowboy and Western Heritage Museum, 1700 N.W. 63rd St. in Oklahoma City.

The live auction will include Diltz’s photos of Woodstock, James Taylor, Crosby, Stills and Nash and Jimi Hendrix.

Tickets are $85 per person. Visit the Cystic Fibrosis Foundation’s Web site at www.cff.org to learn more about CF research and education.

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