Help for Hayden: Benefit to Provide Transportation for Local 14-Year-Old with Terminal Disease

JERSEYVILLE - For the first five years of his life, Hayden Eberlin Brown was a normal little kid. Then he forgot how to walk.

Hayden was diagnosed with metachromatic leukodystrophy (MLD), a terminal disease with progressive neurological decline. Now at age 14, he can’t walk, see, talk or eat. But he can hear and feel, and he needs to get to his doctor appointments. His family is hosting a benefit to purchase a van with a lift so Hayden’s mother can transport him to appointments.

“He was very active and then all of a sudden, this hit him,” said Tammy Legate Schaaf, Hayden’s great aunt.

Schaaf explained that 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 was able to move them. His spine has been replaced with a metal rod so he can sit up and breathe. He has not had an easy life.

But Schaaf worries equally about Hayden’s mother, Kaci. When Hayden was 6 months old, his grandfather and 4-year-old sister were killed in a car crash. Last year, his father, with whom Hayden lived, passed away unexpectedly. Hayden moved in with his mother and three younger siblings.

“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. “She has her hands so full, and she does the best that she can. She’s a good mom, but she’s overloaded.”

Schaaf is hosting a benefit for Hayden and his family on Aug. 3, 2024. From 3 to 11 p.m. at the Do Drop Inn in Dow, attendees can enjoy food, live music, basket raffles, a silent auction and more. It costs $10 per person and children 10 and under are free. They are still looking for donations and hope to see many community members present.

You can also donate to Hayden’s GoFundMe or purchase a t-shirt by contacting Schaaf at 618-556-9497. All funds raised go directly toward the van for Hayden’s transportation.

Schaaf has been pleased, but not surprised, by all the support the family has received, especially out of Jersey County. She noted that the community has shown up to help one of their own, and she couldn’t be more grateful.

“I did not doubt for one minute that Jersey County would step up and help,” she said. “We had a benefit for Hayden’s grandpa and little sister when they got killed in that car accident. We raised $15,000 just in that benefit. It was fantastic. They really showed respect for their community and for the people in it, and there’s no words to describe how impressed we were with the county.”

Now, Schaaf and her family hope to see this spirit again, this time for Hayden. For more information about the benefit, visit the official Facebook event page. Check out Hayden’s GoFundMe or contact Schaaf at 618-556-9497 to donate.

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