JERSEYVILLE - Following a benefit for 14-year-old Hayden Eberlin Brown, his family could not be more thankful for the community’s support. They’re asking for help to raise $3,000 more.
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The money donated by the community will go toward the purchase of a van with a lift so Hayden’s mother can transport him to appointments. Hayden was diagnosed with metachromatic leukodystrophy (MLD), a terminal disease with progressive neurological decline. As he nears the end of his life, his family hopes the money will help them pay for Hayden’s care, comfort and funeral expenses.
“It’s so that he’s comfortable. The poor thing. I can’t imagine living like he’s living, you know?” said Tammy Schaaf, Hayden’s aunt, who organized the benefit and GoFundMe. “He did laugh the other day, and we did get it on video. That’s the first time in, oh my gosh, I couldn’t tell you how long. He had a big old smile and he did stick his tongue out at me. He can’t really see who I am, but he can hear a little bit. So he does know. He still has a sense of humor. He’s in there. He just doesn’t know how to get out.”
As part of his illness, Hayden has been on a feeding tube since before the age of 10. Doctors broke his ankles and knees and removed bones so that he could move the joints. His spine has been replaced with a metal rod so he can sit up and breathe.
Last year, his father, with whom Hayden lived, passed away unexpectedly. Hayden moved in with his mother, Kaci, and three younger siblings. Schaaf said the money raised from the benefit and the GoFundMe will go a long way in supporting Kaci as she cares for Hayden. Kaci lost her daughter — Hayden’s 4-year-old sister — when Hayden was a baby, and Schaaf worries about her as Hayden’s condition worsens.
“You bury one kid and you never come back from that, but to know that this is going to happen again — there’s nothing that I can do to help her but try to make it easier for her, so that's why we’re doing this,” Schaaf said.
The family has been overwhelmed by the community’s support, both at the benefit on Aug. 3, 2024, and through donations to the GoFundMe. Los Tres Amigos, Third Chute, Casey’s and Shell also put out donation jars so customers could contribute, and Schaaf was blown away by the community’s generosity.
They currently have $12,000 raised, and an additional $3,000 will allow them to purchase the van. Any extra money will go toward the van’s insurance or Hayden’s funeral expenses. Schaaf noted that while it sounds “morbid,” it’s the reality that their family is living in. She is thankful for the community’s support as they navigate it.
“I don’t know that words can explain how it feels,” she said. “We’re asking for help. We know there’s a lot of things going on right now…Maybe this article will help get us over that hump so that we can afford to not just take care of him with transportation, but take care of him now and then.”
Check out Hayden’s GoFundMe or contact Schaaf at 618-556-9497 to donate.
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