A sign sporting a large pair of sneakers is popping up all around town.
The sign – a way to raise money and to publicize this year’s Central Oregon Great Strides walk for cystic fibrosis – is the brainchild of Leslie Clark of Redmond, this year’s chairperson for the Central Oregon Great Strides walk.
Cystic fibrosis became part of the Clark family’s lives 18 months ago when Josephine Clark, Leslie’s first grandchild, was diagnosed.
The news was a shock, she said, because “we never knew CF was in the family.”
Cystic fibrosis is an inherited chronic life-threatening disease that affects the lungs and digestive system. According to the Cystic Foundation website (www.cff.org) , a defective gene causes the body to produce an unusually thick mucus that clogs the lungs, leading to life-threatening lung infections, and obstructs to pancreas, stopping natural enzymes that help the body break down and absorb food.
Both parents have to be carriers, explained Sara Clark, Josephine’s mother and Leslie’s daughter-in-law. One in 30 Caucasians is a carrier; if that one-in-30 has a child with another one-in-30, they have a 25 percent chance of having a child with CF, Sara said.
Josephine was diagnosed shortly after her birth. She was born with an intestinal blockage, a frequent symptom of CF that required surgery when she was three days old. A blood test confirmed the diagnosis.
Once Josephine was diagnosed Leslie felt she had to do something. Sara, who lives in Oregon City, heard about the Portland walk. Central Oregon’s walk was in Bend last year, but was small, Leslie said, so she took over this year, moved the event to Redmond for a new start and hopes to make the event bigger, both to raise money for research into cures and to raise awareness about the disease.
With about 30,000 people in the United States with the condition, it’s classed as an orphan disease by pharmaceutical manufacturers, meaning it’s not widespread enough for drug companies to spend money on research, Leslie said. Research that is done is funded by donations, and the CF Foundation is the primary raiser of those funds.
The walk is the organization’s key fundraiser for the year.
Ray’s Food Place has joined as a $1,500 event sponsor for the walk, Leslie said.
While her parents and grandparents focus on raising funds for research and on keeping Josephine healthy, the little girl looks like a typical toddler.At 18 months Josephine is doing well. So far the disease has not attacked her lungs, only her digestive system, requiring that she takes enzymes every time she eats, to help digest her food.
Children with CF need to eat about 150 percent of the calories a normal child eats, Sara said. Josephine loves apples and broccoli and other nutritious items, but they don’t contain enough calories, Sara said, so she pushes the french fries, cheese pizza, ranch dip and cheese sauce, and whole milk mixed with half and half.
Their biggest fear is infection.
“There’s always a risk of infection that could lead to the disease going to her lungs; that’s when the damage starts,” Leslie said.Josephine gets checkups every three months with her CF team at Doernbecher Children’s Hospital in Portland, where her parents work as police officers.
In a way the family is lucky, Sara said, because there are more ways to treat CF’s symptoms than ever before. There are 13 drugs in the pipeline to correct the salt transfer problem that is the basis of CF, Sara said. More research funds would help speed those along. Fortunately, life expectancy for those born with CF has increased to three or four decades.
2010 Central Oregon Great Strides
Walk for Cystic Fibrosis
Dry Canyon Trail beginning at Sam Johnson Park
May 22, registration, 9 a.m., 5K walk, 10 a.m.
No registration fee; donations of any size welcomeGreatstrides.firstname.lastname@example.org
or call Leslie Clark, 541-480-6703
-- story by Trish Pinkerton