GREENFIELD — Life in Sheri and Bill Bednarski’s home can be hectic.
Their three children keep them running in every direction — to sports practices and games, to work and school activities, to friends’ houses.
There is no typical day and usual schedule, Sheri Bednarski said, but one thing has become routine: Each morning, each night and with each meal or snack in between, her youngest daughter, Sydni, takes a handful of pills.
They are vitamins, enzymes and a slew of other medications to treat the 11-year-old’s cystic fibrosis, a hereditary disease that most commonly affects the lungs or, as in Sydni’s case, the pancreas.
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Sometimes, Sydni takes as many as a dozen capsules at once, and other times it’s only three or four. The pills are kept in the family’s kitchen cupboards, Sydni’s bedroom, their cars, purses and book bags — each place for each time Sydni might have something to eat.
May is Cystic Fibrosis Awareness Month. Saturday, dozens of area families including the Bednarksis will gather in Beckenholdt Park for the annual Greenfield Great Strides walk and fundraiser to benefit the Cystic Fibrosis Foundation.
Organizers hope this year’s event will raise $38,500. They already have raised about 60 percent of the total.
Approximately 30,000 Americans have been diagnosed with cystic fibrosis, which causes a thick mucus to form inside the organs, resulting in difficulty breathing and digesting food.
The first signs of Sydni’s illness came in her diapers, her parents said, particularly when she started eating solid foods. No matter what they fed her, Sydni had trouble digesting food properly.
Sydni was diagnosed at 2 after undergoing tests at Riley Hospital for Children in Indianapolis. It became clear at that time, as well, that both Bill and Sheri Bednarski were carriers of the defective gene that causes the disease.
Sydni is the only of their three children affected with the disease; their son, Austin, 17, is a carrier; their daughter, Tori, 20, has a clean bill of health.
Treatments so far are fairly simple, Sheri Bednarski said. Sydni takes medications each time she eats to help her body process food. When she was little, her family members chopped up the pills, mixed them into applesauce and fed them to her. Now, Sydni takes the pills whole and won’t touch applesauce.
She visits Riley several times a year and goes to a Greenfield pediatrician if she has any severe stomach pains.
A few times a month, she uses a vibrating vest, which helps break up mucus in her lungs, but the measure is mostly preventive.
Medicines, treatments and Sydni’s active lifestyle — she plays softball, basketball and volleyball — have kept her cystic fibrosis out of her lungs, her parents said. The family and Sydni’s doctors are hopeful it stays that way, but there is always a chance the disease will spread into her respiratory system.
Without their doctors and information provided by the Cystic Fibrosis Foundation, the family wouldn’t know what they know now about the disease, Bill Bednarski said. So, the family is eager to give back to the foundation whenever it can.
The Bednarskis plan to attend this weekend’s events because they know it is the foundation’s largest source of funding, organizers said.
A record number of people have signed up to participate in the Greenfield walk this year, coordinator Morgan Ferguson said. The event traditionally sees 150 walkers, but this year more than 200 are expected.
Ferguson, whose 5-year-old son has been diagnosed with cystic fibrosis, said the event is a great time for families of patients to come together to share their experiences and stories, as well as donate to a great cause.
The Cystic Fibrosis Foundation was established in 1955. At that time, children with disease rarely made it through their first few years of life. Now, thanks to research, primarily funded by the foundation, cystic fibrosis patients generally live into their 30s and 40s, according to the foundation’s website.
So far, however, there is no cure for any form of cystic fibrosis.
“They say someday CF will stand for ‘cure found,’” Sheri Bednarski said. “That’s what we’re hoping for.”
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The 2015 Greenfield Great Strides walk to benefit the Cystic Fibrosis Foundation will take place Saturday at Beckenholdt Park, 2770 N. Franklin St., Greenfield.
Registration begins at 9:30 a.m., with opening ceremonies set for 10 a.m. The walk will begin about 10:30 a.m.
Organizers say the event is family-oriented 5K walk. Children’s activities, food and other festivities will be available.
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