LITTLE CHUTE, WI — A young child diagnosed with epidermolysis bullosa, a rare disease that causes painful blistering on and beneath the skin, is unlikely to live into their teen years. That’s because there’s no cure. Charlie Knuth beat those odds living until he was 17. Charlie and his family’s determination to make a full, active life were honored at a “Celebration of Community” at Little Chute’s Doyle Park. Many in attendance helped support Charlie and his family during his battle. That includes race car driver Andy Monday who says it was easy to take up Charlie’s fight.
“What really resonated was just his fight,” Monday said. “You know fighting through the odds, overcoming all the different timelines and things that he was given. He was able to fight through those and it really puts your own personal struggles into perspective when you see someone who’s got the odds stacked against him like that.”
Monday remains surprised that the racing community help the Knuth’s close the gap in fundraising.
“Our friends at the Darboy Community Store, Larry and Patti Rodencal, were really good friends with the Knuth family,” Monday said. “And we started a little race car door fundraiser that we thought would raise a couple hundred dollars. The next thing you know there’s race teams from all over the country popping in an getting involved in the community. And before it was said and done we raised over $104,000.”
Monday says he’ll always remember Charlie’s gratitude to those who showed they care by showing up at fundraisers and community events.
Sarah Mickey helped the Knuth family after their home was destroyed by a fire. She remembers Charlie Knuth’s determination to live life to the fullest.
“What Charlie was really known for was his strength and resilience,” Mickey said. “And if there are other kids that have health problems or have issues, Charlie was one to bring the whole community together and help us come to the realization that sometimes our problems are not as bad as we think they are. And it puts things in perspective.”
"Celebration of Communtiy" honoring Charlie Knuth

"Celebration of Community" honoring Charlie Knuth

"Celebration of Community" honoring Charlie Knuth

"Celebration of Community" honoring Charlie Knuth

"Celebration of Community" honoring Charlie Knuth
