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Culver 6th grader’s project grows from father's battle with ALS

October 27, 2011

Reilly Reinhold (left) and Mackenzie Barnhart.

The Culver community is once again rallying around one of its own, and once again it's thanks in part to one of the community's young people. This time, however, the student in question -- 6th grader Reilly Reinhold of Culver -- has a special connection to her project: she's raising money for the ALS Association (alsa.org), to fight the disease which has rapidly altered the life of her father, Culver Community High School graduate Rob Reinhold.
Reilly's Culver Elementary teacher, Missy Trent, says the 11-year-old's endeavor began as part of what has become an annual requirement -- now in its third year -- for students in Trent's reading class: a community service project, to be completed by spring.
Readers may be familiar with the irrepressible Trent for her involvement in the 6th grade's annual "Soup for the Soul" charity fund-raiser, and her efforts to raise funds for a Culver high school student who lost both parents.
Initially, says Trent, Reilly Reinhold's project with fellow student Mackenzie Barnhart revolved around a "pajama day" in which each student would pay $1 to wear pajamas to school, as a means of raising money towards a charitable goal.
"I said, 'Reilly, there's a cause that should be touching your heart,' and she said, 'ALS,'" recalls Trent. "I said, 'You have to realize this is going to put you out there. Are you able to talk about a personal thing that's going on in your life? She said, 'Yeah.' She's very strong. I told her people will want to know what ALS is, so she would need to research it. She said, 'I already know what it is.'"
For those who do not, ALS -- formerly known as Lou Gehrig’s Disease for the baseball player who died from it in 1941 -- stands for Amyotrophic Lateral Sclerosis, "a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord," according to the ALS Association website. "The progressive degeneration of the motor neurons in ALS eventually lead to (patients') death...and with voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed." Though Trent points out there have been major strides and breakthroughs of late in fighting the disease.
Reilly's family, which includes mom Rhonda and brothers Michael and Anthony (Citizen readers -- and many in Culver -- will recognize the name of Reilly's great-grandmother, Bobbetta Washburn Ruhnow) found out about dad Rob's ALS last year on Sept. 20. Since then, she says, there has been a been a quick progression of the disease, which has left him wheelchair-bound.
"Last year at this time," recalls Reilly, "he was riding a bike. When we moved (to a new house) in November, he was fine, and now he's in a wheelchair."
"I wanted to work harder," she says of one of the effects the news has had on her, "to make him proud. I wanted him to know everything's okay, and I work my hardest."
She adds the illness also "brought everybody (in the family) a lot closer together. That's one of the only good things that's come out of this."
One early challenge to Reilly's project was approval for the "pajama day" concept.
"I said, 'Mr. Kitchell (CES principal) will never agree to a pajama day,'" says Trent. "He never has, but they kept begging me, so I said, 'Go ask him,' and he said yes. We were all excited.
"Chuck has always been extremely encouraging and supportive (of service projects)," Trent continues. "Whenever my students ask to do a service project, he always says yes. I think it shows that he also cares about these kids doing these projects."
The students, working with Trent and CES art teacher Joyce Lyman, worked up a flyer to hang around the school and send home with students, and Reilly read about the project over the school's announcements. A McDonald's gift card was arranged as a prize for a drawing for anyone donating more than $1.
The pajama day took place Oct. 19.
"I can't believe the outpouring of money and everything," Trent says, noting as of pajama day, $1,066 has been collected, after just a week of efforts.
"I was really surprised how much money we've raised," agrees Reilly. "I thought we'd make about $600. My dad's friend, Chris Chambers called all his employees (at Rideon Bicycles on Lake Shore Drive), and they're all wearing pajamas today. It feels like everybody knows about it. My mom and grandma have gotten calls."
Trent says the project will be kept open for the time being, should anyone wish to donate towards it, which can be done at the Culver Elementary office.
"A lot of people know her dad, and we're all rooting for him and hoping for the best," she adds.
"Most of the students at school have been really supportive," Reilly says. "They tell me they're going to donate more than a dollar and ask how my dad is, and say, 'I hope he's doing good.' A lot of people know about it, so a lot of people from our church (Wesley United Methodist in Culver) have been bringing in dinner and stuff, and people have been coming and visiting.
"I hope the money helps speed up the process of them finding treatment or a cure," she adds, "or helps other people with ALS. It could be a future thing."
Reilly wants people to know her father is "still the same person, just in a different state."
"He's really proud of me (for the fund-raiser). He says it's a good thing and hopefully it will make a big difference in the process of helping them find a treatment or a cure."

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