Hundreds of people came to make great strides for a terminal disease by walking and donating on Sunday afternoon in Stevens Point.
The walk benefited the Cystic Fibrosis Foundation for more research and new treatments for those living with the disease. The foundation's website shows about 30,000 people in the United States are diagnosed, with about 70,000 worldwide. It's a genetic disease that causes thick mucus to buildup mostly affecting the lungs and digestive system, making it difficult for those affected to breathe. It can also lead to infections as bacteria collects in the mucus causing inflammation and scaring in the lungs. Most people are diagnosed at birth or within two years of life.
Right now, there is no cure. There is a lot of new medicines that have helped to extend the life expectancy, that once was very bleak. Previously, those diagnosed would only live into their teenage years, but now the expectancy has lengthen to more average lifespans.
Tom Treder was diagnosed shortly after he was born. He's been living with it for 20 years and said it is not the easiest thing to live with, especially as a child.
"It's not a super happy thing to deal with when you're sitting in the corner doing your lung treatments and everyone else is playing or something like that," he said.
For Peter Gebhardt, he said finding out his three-week-old daughter was diagnosed was shocking as there is no history of the disease in his family.
"We're like how can our 3-week-old child have this disease and what does that mean," Gebhardt said. "It was easily the worst day of my life."
For any CF patient, constant medications, doctor visits, and even hospitalization are a regular occurrence.
"Hannah does an hour of respiratory therapy a day. That's 35 minutes in the morning, 35 minutes in the evening. She has to do albuterol treatment and trying to get a three-year-old to wear a nebulizer mask is quite challenging," Gebhardt said. This is just a small part of what she needs to do daily.
Eric Scharenbroch, the walk's co-chair who also has a son diagnosed with the disease, said the research is going well, but the funding is still needed.
"The research is such that it's advancing faster than the funding can meet it. It's not something that's federally funded," he said.
The new medications and advances have started to allow people like Treder to live a more-normal life, but he said the outlook of knowing he has a terminal disease is the hardest part about it. However, it's pushed him to live his life to the fullest. He's about to start his own company to personally train people and inspire others.
"When you have something big pushing you to just be the most you can be as fast as you can possibly be it, I just want to start my own business and start helping other people turn their lives around the way I've turned my own life around," he said. "It's a little easier to inspire someone when you can be like, well, you don't have a terminal disease," he added laughing.
Head to the Cystic Fibrosis Foundation's page for more information about the disease. If you would like to donate to the Steven's Point fund, click here for a link to their walk's information site. You can also have portion of your check go towards the cause as the Chili's in Stevens Point is helping to donate a percentage of its profits from customers who mention the cause.
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