FOX VALLEY, Wis. (WFRV) – A Fox Valley family has teamed up with Pearl Jam frontman Eddie Vedder for a documentary to raise awareness on a rare skin disease.
That documentary, entitled ‘Matter of Time,’ is now streaming on Netflix.
“They’re going to laugh, they’re going to cry, and they’re going to see how quickly we need to cure this absolute torture that children are dealing with just on a daily basis,” Trisha Knuth said.
The documentary spotlights the daily lives of families with children battling Epidermolysis bullosa (EB). This painful disease causes a person’s skin to tear and blister. Trisha Knuth’s son Charlie had the disease. He passed away back in 2023. Knuth’s 14-year-old daughter Meili also has EB.
The documentary features Meili and Charlie.
Charlie’s connection with Eddie Vedder actually goes way back to 2014, when the rockstar invited him to come on stage during one of his concerts in Minnesota.
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“To see him have that moment, gave me that moment of absolute sheer happiness that he got to experience such wonderful things,” Trisha said. “Especially with Ed and Pearl Jam.”
The two formed a friendship and stayed in contact.
“They became just like really good friends, and it wasn’t unusual for Charlie to just be Facetiming with Eddie Vedder,” she said.
Charlie passed away in 2023, ending his courageous battle with EB. Shortly after his death, Vedder invited the Knuth family to Seattle for a benefit concert for his EB Research Partnership foundation. Its mission is to raise funds for research, treatments, and finding a cure for EB.
While on the trip, Knuth said somebody gave her a microphone to wear. She figured it was to film promotional material for the EB Research Partnership website. She said she was happily surprised when she found out the footage was going to be part of the ‘Matter of Time’ documentary.
“It was extremely emotional watching it the first time,” she said. “That was the first time I allowed myself to hear Charlie’s voice, see him running around, and being happy. So that was incredibly emotional for me.”
Knuth said she’s watched the documentary about seven times at this point and that it gets better with each watch. She has also been part of some of the red carpet and other promotional events for the documentary. She said it’s been a whirlwind, but that it’s been worth it because she knows the documentary can bring about change.
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“It gives me a lot of hope,” she said. “I watched my son Charlie die. He waited his whole life for a cure or a treatment. And now my daughter Meili is 14, and her lifetime I think that that will happen.”
For more information about the film, please click here.
“”Nobody could have put this in the spotlight like Eddie Vedder did ,” Knuth said.
