Seeing the effects of a deadly genetic disorder up close has compelled Wellington Eagles Aerie 2051 to take action.
Recent fundraisers have brought in more than $2,500 that will be donated to the Northern Ohio Cystic Fibrosis Foundation with efforts to put together more money planned for the winter.
Dawn Schieferle, daughter of Eagles member Theresa McDonough, lives with cystic fibrosis — or CF — and was on hand Nov. 1 when collected funds were turned over.
A 2006 Wellington High School and Lorain County JVS graduate, Schieferle continues to fight through regular two-to-three-week hospital stays every few months and other residual effects of the disease.
“I need to take enzymes when I eat because my body doesn’t properly absorb nutrients,” she said. “You have all this mucus build up and for the longest time, there wasn’t a good way to get it out besides coughing and chest compression. Now they’re coming out with machines that do that for you.”
Eagles trustee Dorothy Shaw lost her eight-year-old son to CF in 1967.
“I stayed day and night in the hospital and had a nurse say to me, “We have kids here who are a lot sicker than your son,” she said. “Two days later he was gone. If you have the genes on both sides of your family, you’re likely to have a child born with it. I lost my son but had two that were OK. He didn’t seem sick when he was very young but he would sweat profusely.”
CF affects the lungs, intestine, liver, kidneys, and pancreas with no known cure. Most recent estimates for median life expectancy in the United States are 37 for women and 40 for men.
Signs of CF in children include poor growth, lack of weight gain with normal food intake, salty-tasting skin, mucus buildup, regular chest infections, and coughing or shortness of breath. Newborn babies will often suffer bowel obstruction.
The disorder can be caused by more than 1,500 genetic mutations. Two-thirds of cases worldwide can be traced back to changes in the cystic fibrosis transmembrane conductance regulator gene.
“I take about 40 pills a day,” said Schieferle. “There’s also tons of breathing treatments. I’m lucky to this point. Many of us don’t look sick but we are on the inside. I have great doctors and support.”
In 2014, she went in to the hospital for regular treatment and ended up on life support and in a three-week coma.
“My lungs were failing and as of right now I’m in kidney failure,” she said. “The doctors told my mom I wasn’t going to make it. I made it and they didn’t really know what happened. You and your loved ones have to be so careful about your immune system.”
Schieferle has kept her lungs healthy enough to not have to go on a transplant list.
“We’re looking into the future,” she said. “I probably won’t be able to have kids but there’s always adoption. I want to be healthy enough to be there for them.”
Willie Szabo, president of the Eagles, said the organization’s polar plunge this January will also go toward raising funds for CF. Since the beginning of 2016, Aerie 2051 has donated roughly $100,000 toward various causes in the Wellington area.
“We pick a charity every year to work with and we’re happy to have had this one brought before us,” he said. “Dawn and her family have been through a lot and it means a great deal to us to be able to help out even a little bit.”
Jonathan Delozier can be reached at 440-647-3171 or @DelozierNews on Twitter.