Many support Lee's first Great Strides Walk

Apr. 27, 2013 @ 07:30 PM

Whether they were alone, with family or with a larger support group, hundreds of people came to Kiwanis Park in Sanford Saturday morning with one goal in mind: helping those who suffer from cystic fibrosis.

There were massages, hot dogs, a silent auction and games for kids, but the main focus of the supporters was the Great Strides Walk, sponsored by the Cystic Fibrosis Foundation. That group holds fundraising walks all around the state, but Saturday's was the first held in Lee County in recent memory — possibly ever — according to organizers, who estimated a turnout of between 200 and 250.

For people like Elverso Powell and Donna Stewart, registered respiratory therapists at Central Carolina Hospital who formed a group called PEEPS — which stands for Positive End-Expiratory Pressure and is a play on the slang word for friends — the event was a welcome addition.

Both said they run into many people with cystic fibrosis in their work with respiratory ailments. The genetic disorder affects several organs in the body — primarily the lungs, but also the pancreas, liver and intestines — and creates dangerous amounts of mucous as well as infections and heart issues. It is incurable but can be managed through therapy, antibiotics and double lung transplants, and it is estimated to affect 30,000 people in the U.S.

"Imagine you give a child a wet balloon and tried to get him to blow it up, but he can't," Powell said. "That's what (Cystic Fibrosis) is like, with the mucus preventing the lung from inflating all the way."

One person who doesn't have to imagine what the disease is like is 6-year-old Maylonnie Downey, who was at the walk with family and friends wearing purple-and-gold shirts with her likeness on them. The first grader preferred running around with friends to being interviewed, but her parents said her energy levels are not always that high. The girl is, according to her mother Leigh, the only known case of someone who suffers from both cystic fibrosis and the blood disease sickle cell anemia. She also has asthma and diabetes, both caused by cystic fibrosis.

So while caring for her can be exhausting, Leigh Downey said, the turnout at the Great Strides Walk was a great sight to behold.

"It means a lot to know that there are others going through the same, and also others who want to help," she said.

One of those people is Sherell Stevenson, a teacher at J.R. Ingram Elementary School who comes after school to teach Maylonnie at home since the girl's autoimmune system is too weak for her to go to school. In addition to spending time out of school with the girl, Downey said Stevenson was also at the park Saturday morning, raising money and awareness for her home-bound pupil and others like her — people who often have to deal with frustration and confusion surrounding the disorder, not just physical pain.

"She's such a people person," Downey said of Maylonnie. "She'd love to be in school, getting awards and doing projects and playing with friends. But she can't."

Collette Pond, a development manager with the Cystic Fibrosis Foundation helping coordinate the walk, said the best part of events like this was the dual benefit of raising money and also letting local families who don't know about groups like the foundation learn about their services — which she said  can lead to a better quality of life.

"We have medical services, care centers and so much information for them," Pond said, adding that it was a successful event — indeed, the various events reportedly exceeded organizers's fundraising goal of $25,000.

"We really rely on our volunteers in each community, and Sanford has done a great job," Pond said.