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Lost Lake: Alaskan with cystic fibrosis will run for a cure this weekend

When nearly 700 runners press together Saturday morning at the Primrose Campground north of Seward to start one of Alaska's most popular cross-country races, some will run to win, others to set personal records, most to soak in some gorgeous backcountry scenery while racking up a tough workout on a course that race organizer Patrick Simpson describes as "grueling."

Anchorage's Sabrina Smith Walker, 26, will set off on the hilly 15.8-mile Lost Lake Run, to knock down yet another barrier in a lifetime full of bashing them.

Lost Lake Run is a fundraiser for the Cystic Fibrosis Foundation, and for only the second time in the race's 21-year history the field will include runners afflicted with the disease.

'Hardest part is breathing'

Cystic fibrosis is a chronic disease that afflicts some 30,000 Americans. Most who live with it have their lungs clogged with a thick, sticky mucus that brings on wheezing, persistent coughs and frequent lung infections. Just a few decades ago, most children with cystic fibrosis often didn't live out their teenage years. Today, the average lifespan is 37, according to the U.S. National Library of Medicine, with some living into their 40s and beyond. The Lost Lake Run has raised more than $1.3 million in cash for the foundation, helping scientists fighting the disease caused by a defective gene.

"The hardest part for me is the breathing," Walker said. "I have to focus on that. I have to concentrate on deep breathing and getting air into my lungs."

That can be difficult during normal daily activities for many CF patients, but Walker has found that running actually helps clear her passages. She particularly enjoys getting out on the Tony Knowles Coastal Trail in her hometown several times a week -- but the Lost Lake Trail, which tops out at an elevation of 2,100 feet, will be the most challenging run she's attempted.

"I cough a lot and spit up stuff a lot," she said. "But the more I run, the easier it is for me to get my breathing patterns down. Getting all that gunk out helps me breathe better. The more I run, the more I take care of my lungs, the more the problems of CF seem preventable. On longer runs, it's easier for me to get a rhythm going."

Tough regimen

Taking care of her lungs takes time. Many of Walker's days include three nebulizer treatments, a sinus rinse, six enzymes and two calcium supplements among an assortment of pills and a vest to aid breathing that she wears for 20 minutes twice a day.

All that allows Walker, a substitute teacher, more freedom to do what she loves, and running is high on the list. After all, there are times she thinks she's living on borrowed time. First diagnosed in kindergarten, it wasn't long before a doctor told her family not to expect Walker to live past age 9. "Back then, not as much was know about CF," she recalled. "It was really hard for my parents."

Walker attended West High School in Anchorage, where she ran on both the cross-country and track teams. But not until Walker was a junior was anyone on the team aware she was sick.

"Honestly, when she started, we had no idea," said Joe Alward, her coach at West for four years. "None of my coaches or assistant coaches knew that she had a medical issue." That changed when one of Walker's teammates told Alward the runner was in the hospital during her junior year.

"I was surprised. I talked with Scott, her father, when I got (to the hospital) and he told me this is something that happens once and twice a year where she has to go in and get an overhaul on her body because she's just wiped out. It takes lots of medicine and treatment.

"She looked terrible," Alward said. "I thought she was dying. But her dad assured me that even though she gets really sick, her body is able to recover. I think maybe that's why she's such a gutsy competitor. She just likes to compete."

An inspiration

Walker will need to draw on that instinct Saturday as the trail winds uphill for much of the first nine miles, before leveling off and then cascading downhill to finish at the Bear Creek Fire Station. Somewhere along the way, she may think of Jerry Cahill, a runner battling cystic fibrosis who is now in his 50s and who recently endured a lung transplant.

"He ran in a 10-K race three months post transplant," Walker said. "That determination and strength is inspirational and motivating to me. And I want to do all that I can so I can prolong getting a lung transplant."

When she reaches the finish line, husband Adam Walker will be waiting with a warm embrace – the kind of reward that keeps any runner going.

Contact Mike Campbell at mcampbell(at)alaskadispatch.com