SPRINGFIELD, Ill. (AP) - The 6 a.m. wake-up calls, daily vest therapy, hours of treatment, frequent hospital visits and the array of pills her daughter, Rayna, has to ingest each day to stay healthy could be much worse, Jennifer Kruger says.
“She makes it so much easier to deal with because she always has a smile on her face,” she said.
That smile, and Rayna’s infectious personality, caught the eye of the Cystic Fibrosis Foundation’s Great Strides campaign, which featured her on brochures and in-store pinups nationwide this month.
Rayna is a second-grader at Sandburg Elementary School in the Springfield School District who is living with cystic fibrosis, a life-threatening genetic disease that affects the lungs and digestive system.
People from the community are invited to participate in Rayna’s Rally at 9 a.m. Saturday in Washington Park. The walk raises money for the Great Strides campaign.
The event in Springfield is one of more than 550 walks taking place across the country.
About 30,000 Americans are diagnosed with the genetic disorder. The Cystic Fibrosis Foundation funds lifesaving treatment and searches for a cure.
Few American children diagnosed with cystic fibrosis in the 1950s lived to attend elementary school, according to the organization’s website. Today, people live into their 30s, 40s and beyond.
The disease causes the body to produce an unusually thick, sticky mucus that clogs the lungs, obstructs the pancreas, and stops natural enzymes from helping the body break down food and absorb vital nutrients.
Kruger said she got involved because she wants Rayna to live the longest and healthiest life possible. The disease hasn’t held her back much so far.
Rayna loves to play soccer, participate in gymnastics, and play with her older brother and sister. It’s hard to imagine the 8-year-old having a more positive outlook.
She said she doesn’t mind treatment because she plays video games and works on homework while it’s going on. She also points out that cystic fibrosis allowed her to be the recipient of a Make-A-Wish Foundation donation that sent her and her family to Disney World last fall.
“My favorite ride was Tower of Terror,” she said.
Rayna’s positive and optimistic attitude makes her an inspiration to other students at Sandburg, principal Keith Kincaid said.
“She deals with this, and we never see her get down at school,” he said. “She is happy and does everything a parent wants their child to do at school every single day.”
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Source: The (Springfield) State Journal-Register, https://bit.ly/1EwjvEh
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Information from: The State Journal-Register, https://www.sj-r.com
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