GREENFIELD — The Parker family knew very little about cystic fibrosis when Katie was diagnosed with it as a baby. And they knew no other families in Greenfield who had been affected by the condition. It was lonely.
Surrounded by supporters Saturday morning, Pat Parker’s heart was warmed.
As Greenfield Great Strides celebrated its 17th walk Saturday morning at Beckenholdt Park, the annual event’s organizers honored Parker and her family for their dedication to the cause.
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Parker launched the walk in Greenfield in 2000 after her granddaughter, Katie Parker, was diagnosed with cystic fibrosis, a genetic disorder that prohibits normal function of the lungs and digestive system.
Sixteen years later, the Parker family now knows more than 40 families in the community who have had a loved one diagnosed with cystic fibrosis. They’ve also played a key role in helping to raise more than $700,000 for the Cystic Fibrosis Foundation, organizers said.
As the walk began, Parker said she was honored to be recognized for the role she’s played in Greenfield’s Great Strides event. More than 5,000 people have participated in the event since it began in 2000. More importantly, she noted, advanced research funded by such events has led to longer life expediencies for Katie, who is now 18, and others living with the disease.
“It’s really amazing,” Parker said.
Hundreds of people making up 15 teams walked two miles around the nature park to honor loved ones and friends living with the condition; the campaign raised nearly $24,000 this year leading up to the event. More than 33,000 Americans are living with cystic fibrosis, a hereditary disease that causes thick mucus to build up in the lungs or pancreas, according to the Cystic Fibrosis Foundation. In the lungs, the mucus blocks airways, causing infections and making it difficult to breathe. In the pancreas, the mucus prevents food from being digested properly.
Today, the life expectancy for someone diagnosed with cystic fibrosis is close to 40, a drastic improvement compared with the 1950s, when most people didn’t survive past elementary school, the foundation states.
At Saturday’s event, Team Hailey brought roughly 35 people to support 17-year-old Hailey Blevins, who is living with cystic fibrosis and served as the walk’s ambassador this year.
Hailey was diagnosed with cystic fibrosis when she was 4 months old. Since then, much of her life has been consumed by hospital stays and medication to help treat the disease. Once a year for the past 10 years, she gets the opportunity to walk among others who battle the same condition that makes it hard for them to breathe.
People living with cystic fibrosis are encouraged to distance themselves from others with the disease to prevent cross infection, which means Hailey doesn’t often get to spend time with the people who understand what she goes through, her mother, Angela Jenner, said.
“Through the year, she’s in the hospital. She’s isolated, and it’s very lonely,” Jenner said. “So at the walk, when 35 people are wearing your shirt and supporting you, it’s the shot you need to get through the next year.”
Because much of the money donated to the Cystic Fibrosis Foundation goes directly toward funding research, raising money for the walk means her family is helping to find a cure, Jenner said.
Hailey’s team had raised nearly $2,500 of the approximately $24,000 raised for the event before the walk started.
Seeing all the support encourages Hailey to keep going, to keep fighting and to keep dreaming, she said.
It’s an event Hailey looks forward to every year.
“It’s amazing to see all the people and the love and the support,” she said.
For families like Hailey’s, the annual walk gives them hope for further research that will make it easier to live with cystic fibrosis and the opportunity to celebrate the past year’s accomplishments while remembering those who lost their battle with the disease, said co-chair Morgan Ferguson, whose young son has cystic fibrosis.
They have Pat Parker and her family to thank for that, Ferguson said.
“If you live in Greenfield, and you don’t know what CF is, you’re living under a rock,” Ferguson said. “Pat pounded the pavement and knocked on doors to tell people about it and to raise money.”
Cystic Fibrosis is a genetic disease that affects about 33,000 Americans. It causes thick mucus to build up in the lungs and pancreas.
In the lungs, the mucus blocks airways, causing infections and making it difficult to breathe. In the pancreas, the mucus prevents food from being digested properly.
Source: The Cystic Fibrosis Foundation