Darboy teen Charlie Knuth, who publicly battled a rare skin disease his whole life, dies 'peacefully and painlessly,' his mother says

Drake Bentley, Milwaukee Journal Sentinel
Updated ·2 min read
22

Darboy's Charlie Knuth, whose fight with a rare skin disease captured the hearts of many in Wisconsin, died Friday at the age of 17.

Charlie's mother, Trisha, said in a Facebook post that her son "peacefully and painlessly" died in her arms. She asked that the community offer the family comfort.

A family friend, Tara Lucia, posted on Facebook that Charlie was flown to Children's Wisconsin hospital in Milwaukee on Thursday morning from ThedaCare Regional Medical Center after he started to get sick around 5 p.m. Wednesday. Around midnight, his mother called 911, she said.

The Fox Valley community will now offer support to the Knuth family, which is something they've shown to do graciously in the past.

The community pulling together to support Charlie, who suffered from serious medical conditions, is well documented over the years. When he was 6 years old, a carnival fundraiser helped raise more than $5,000.

Adopted shortly after birth, Charlie was born with epidermolysis bullosa, also known as EB. He didn't have the gene that binds skin together. As a result, his skin blistered frequently, inside and out.

The rare skin disorder causes debilitating pain and infections, as well as weakened immune systems. The condition resulted in multiple medical procedures for Charlie.

Charlie didn't let that stop him from living life the best way he knew how. When he was 8, he got to take the stage with Pearl Jam at a concert in St. Paul, Minnesota.

"He was on stage and Eddie basically turned him one direction and had Charlie wave to the crowd and then all of the thousands of people in that direction would wave back," Trisha said in 2014. "And then he would turn him the other direction and he'd wave and that whole section would wave back. It was absolutely thrilling."

Shortly after Charlie was diagnosed with lymphoma, a fundraiser created by a local auto race raised $100,000. The original goal for the fundraiser was $1,000.

Charlie Knuth died on May 26, his mother said in a Facebook post.
Charlie Knuth died on May 26, his mother said in a Facebook post.

Two years later, tragedy struck the Knuth family when their home caught fire. Everyone, including their pets, got out safely, but the blaze left the home uninhabitable.

The community quickly rallied again and raised more than $19,000.

"Even though his life was filled with pain, he wanted to live, be a dad, have a girlfriend," Trisha said. "We will NEVER feel relieved that Charlie died. We would make him our son over and over again."

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This article originally appeared on Milwaukee Journal Sentinel: Charlie Knuth, Darboy boy with EB, dies 'peacefully,' his mother says