A flock of miniature remote-control planes circled the clouds over Eureka on Aug. 29 in an effort to raise money for an area child with a rare genetic disorder.
Charlie’s Believe Fly-In and Air Show fundraising event was organized by Larry Leuchtmann, 43, of the St. Louis Radio Control Flying Association (SLRCFA) in honor of his daughter, Charlie, 6.
Hundreds came to the organization’s airfield, 788 Augustine Road in Eureka, for the air show.
Leuchtmann said he was not expecting a large turnout.
“I thought that it had the potential to be bigger than one of our normal (SLRCFA) events, usually we get a couple dozen guests to come through,” he said on Aug. 29. “Normally our pilot turnout is about 30, and I think we have plenty more than that today, we’re doing much better than we normally do.”
Leuchtmann said the support from the community is “truly amazing.”
“It shows that people want to help when they have the opportunity to help,” he said. “It couldn’t be more flattering, for them and all they’ve done for Charlie, it’s truly amazing.”
The event also featured free food, raffles, games and a bounce house.
Raffle prizes included St. Louis Cardinals baseball tickets, restaurant gift cards, bowling gift cards and RC airplanes and hardware, Leuchtmann said.
All of the proceeds from the air show, including pilot fees, donations and raffle ticket sales from the event, will benefit the Dup15q Alliance, a nonprofit raising awareness to chromosome 15q11.2.13.1 syndrome (Dup15q Syndrome). The nonprofit also raises money for research and medical trials to find a cure for the disorder.
Leuchtmann’s wife, Lisa, said more than $2,500 was collected even before the event.
“I think we did $1,000 in the first 15 minutes,” Larry Leuchtmann said on Aug. 29.
The couple said they did not have a specific goal in mind for the air show.
“We’ve just asked people to come out and have a good day, and donate whatever they want, and I think that’s the best approach,” Larry Leuchtmann said.
Lisa Leuchtmann said the event was initially planned as a St. Louis regional walk sponsored by the Dup15q Alliance.
“That felt overwhelming to us at the time, something that big,” she said. “So, we decided to do this instead, and we thought it would be family friends. And it just kept growing, the numbers kept growing so we’re blown away to see this kind of turnout.”
Larry Leuchtmann said he has been a member of the SLRCFA for four years.
Michael Hellman, of Carlyle, Ill., a member of the organization and a participant in the air show, said he came to the air show to support his friend.
“We all fly together here, this is my homefield, and it’s for a good cause,” Hellman said. “I know his daughter. It means a great deal to get as much money as we can raised for her and Dup15q.”
Dennis Chivetta, of Ballwin, who is the president of the SLRCFA, said, “We need to support the community, especially our members. He (Larry) has put it all together, and I think he’s done a fabulous job.”
Chivetta said the event raised awareness for Dup15q and the SLRCFA.
“It’s two-fold, people are here to support the charity organization, but I think in addition we get some exposure to the hobby, so they understand what it is and where we are,” he said. “The camaraderie we have as a group and (how) we support each other, I think that’s all important to demonstrate.”
According to the National Institutes of Health, Dup15q Syndrome affects between 1 in 30,000 in the United States and 1 in 60,000 worldwide.
The duplication of a portion of the 15th chromosome can lead to a wide range of developmental and behavioral disabilities, according to the Dup15q Alliance website. Babies born with the disorder often have poor muscle tone, motor delays and speech or language delays.
Lisa Leuchtmann said Charlie was first diagnosed around a year after she was born.
“She (Charlie) just started missing milestones, she’s not walking, she’s not smiling,” she said. “There were a lot of things that were abnormal that separately didn’t make sense but together we knew something was going on.”
Lisa Leuchtmann said her family was immediately referred to the Dup15q Alliance after Charlie’s diagnosis.
Lisa Leuchtmann said the airshow was one of the first times she’s felt support from her community as the parent of a special needs kid.
“It’s very isolating when your child has special needs. It’s mentally draining, it’s physically draining, it’s hard to take them places,” she said.
To donate or learn more about Dup15Q Syndrome, visit dup15q.org For more information on the SLRCFA, visit slrcfa.org.
