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Over the past four years, Ellie McDearman has been working on a golden idea.
It involves pumpkins and face painting, games and prizes, crafts and raffles -- everything a 16-year-old girl might want at a party.
But this isn’t about Ellie’s next birthday bash or about just having a fun time. This is about Ellie’s mother, Julie. This golden idea is about her.
Julie has been dealing with multiple sclerosis for almost eight years now, handling what many call an “invisible disease” where stereotypes lead to pictures of helpless people bound to wheelchairs.
Together, Julie and Ellie want to take that stereotype and roll it away with the first ever M.S. Pumpkin Derby at Louisville Slugger Field on Nov. 2.
The basis of the event is multi-faceted. First, it will serve as the culmination of Ellie’s Gold Star Award from the Kentuckiana Girl Scout Council. Second, it will include non-pumpkin games and prizes.
But the two biggest draws are the pumpkin racing and decorating contests and the education of the general public about MS.
Really, it’s about that last part.
“When I tell my friends my mom has MS, they don’t understand,” Ellie said. “If I said she had cancer, they would understand. But with MS, they don’t see it.”
For Ellie, that’s the point.
Julie isn’t helpless or wheelchair bound, but because MS affects the central nervous system, she can struggle with simple tasks like picking up a pencil. Problems can last for days, weeks or months and can come and go.
The disease at its worst can leave people paralyzed. For lesser cases, problems still occur with basic motor functions or make them extremely difficult, but a person can still function. The stigma of the disease leaves those who aren’t wheelchair bound in a bind.
“I’ve had it for more than seven years and I initially did not tell people at work,” Julie McDearman said. “I didn’t tell them because I didn’t want them to think I couldn’t do my job. I didn’t want them to think I would be a liability, because I’m not.”
But as Ellie has solidified the Pumpkin Derby over the last two years, Julie said she realized that hiding her MS encouraged the stereotype and contributed to ignorance of the disease.
“The longer people don’t tell others what MS really is, because the stereotype is you’re in a wheelchair, the worse the stereotype gets,” Julie said. “I realized if I didn’t support (Ellie), then we would never get to a point where we could show people what MS really is.”
Earning Her Gold Award
Ellie McDearman is a 16-year-old student at North Oldham High School. She and her family live in Goshen. She’s been an active Girl Scout in the region for the last 11 years.
Now, Ellie is about to go for one of the last and most important achievements a Girl Scout can earn: the Gold Award.
Part of the requirements is the impact must be lasting -- enter the Pumpkin Derby. To meet the requirements, Ellie and Julie have set up a non-profit corporation to continue the derby annually.
Julie will serve as the organization’s president for two reasons: first, because the McDearmans were unsure of putting then 15-year-old Ellie in charge of a non-profit, and second, so that Julie can make sure the annual event continues to run smoothly when Ellie leaves for college in a few years.
In addition to her mother, Ellie is also relying on an adviser and a committee formed to help both her Gold Star Award candidacy and the event.
One of those additional helpers is Lorie Marcum, a close friend of the McDearmans’ and a former employee of the regional Girl Scout organization.
For Marcum, her role in the derby started 11 years ago, when she met Julie, who signed her 5-year-old daughter up for Girl Scouts.
“And I just remember Julie saying ‘I don’t know what I’m going to do if Ellie isn’t a Girl Scout because I love Girl Scouts,’ ” Marcum said.
Julie is a former Girl Scout herself and the current troop leader in the Goshen area. She has always been a strong influence on Ellie, Marcum said, and bases her strengths off her experience as a Girl Scout.
When things hit a snag with organizing the Derby or when it comes to needing more supplies, Marcum has been the one the McDearmans called.
“I have said, ‘tell me what you need and I will do what I can to find it,’ ” Marcum said.
This often includes finding more pumpkins or helping put together games. The event is personal for Marcum too, beyond her friendship with Julie.
“I have a sister-in-law and a step-sister with MS,” Marcum said. “So it’s personal to me to learn more about this disease. (This event) is about awareness. It’s about her mother who has MS. It’s about educating the public.”
Ellie’s project is larger than most Gold Star Award projects. Marcum, who has decades of experience with Girl Scouts, said most projects are similar to park beautification. Setting up a large, annual event supported by a non-profit organization is “above and beyond” what most projects include, Marcum said.
“The scope, the largeness of this and the amount of people it will reach is what makes this above and beyond,” Marcum said. “Once people are aware of what a MS patient goes through they will be more likely to support the MS community and research.”
Off To The Races
The focus has always been to educate the public about MS. But the Pumpkin Derby is to draw people in.
During the derby, racers will outfit their pumpkins with wheels and roll them down a track. The inspiration came from a well-known California race and the orange color of the pumpkin is often used to symbolize the disease, Ellie said.
Ellie has never participated in a pumpkin derby before. But she has made a handful of pumpkin racers for practice.
Julie said pumpkin racing is sort of like pinewood derby racing, but the MS derby plans to be less “intense” than those matches. Most racers insert metal rods into the base of the pumpkin and then attach wheels to make a racer.
In order to race in the derby, hopefuls must register at mspumpkinderby.com by October 21. Each racer is charged a $25 fee. For those less competitive, a pumpkin decorating contest will also be held.
The event is free of charge to attend. A KidsZone pass for one turn on all the rides costs $5.
The McDearman’s hope the general public will become more aware of what MS really is, while creating a fun event currently unavailable in Louisville.
“If you know a little about it, hopefully you’ll be a better family member, a better friend and a better employer or employee,” Julie said.
And for Lorie Marcum, the event will be the culmination seeing a 5-year-old Ellie turn into an amazing leader.
“I think she’ll make a huge impact on this community and I don’t just mean Goshen” she said.
To learn more about the MS Pumpkin Derby, including how to register to race in the derby, go to mspumpkinderby.com.
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