Stony Run Brew House ribbon cutting dedicated to 4AydenStrong
Stony Run Brew House will hold a fundraiser for the 4AydenStrong Foundation in conjunction with ribbon-cutting planned for Thursday, Nov. 8. York Dispatch
Bill Kohler can barely recite the names of children affected by a rare form of pediatric brain cancer without crying.
But the tears are making him stronger as he faces his life’s nemesis: DIPG.
The currently incurable disease stole his son — Ayden — from him on March 22, 2017, the 50-year-old Springettsbury Township resident said. Ayden was 10.
“The pediatric cancer community shouldn’t exist,” Kohler said.
The Army veteran said his “biggest dream” is to have a small research facility nearby focused on eradicating children’s cancers. When he can find the time, he added, he also wants to start a rare disease committee for future legislative pushes.
“Individualized treatment needs to be given to each kid to try to get to the tumor,” Kohler said.
DIPG: Diffuse intrinsic pontine glioma is “a type of tumor that starts in the brain stem, the part of the brain just above the back of the neck and is connected to the spine,” according to St. Jude Children’s Research Hospital.
"The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat,” the hospital says.
Approximately 150 to 300 patients are diagnosed with DIPG each year in the U.S., according to DIPG.org.
“Three kids were diagnosed in York County in an 18-month period,” Kohler said. “But there was nothing that connected them environmentally.”
This legislative session, Kohler said he supported a bill passed into law that allows Pennsylvanians to voluntarily donate $5 to the Pediatric Cancer Research Fund when renewing a driver’s license, photo identification card or vehicle registration.
Funding will be used exclusively for research approved by the Pennsylvania Cancer Control, Prevention and Research Advisory Board, according to the law.
“I get a lot of calls and emails for help,” he said.
Foundation: His foundation, 4AydenStrong.com, was established not only to help families lessen the burden by assisting them with a rent or car payment, medical expenses or even an iPad, but also to fund research to find a cure.
Kohler, however, doesn’t feel that he’s been “productive with the foundation.”
“We get very personal with the families and the kids,” Kohler explained.
He referenced a girl who recently died who he said “infected” him.
She worked on making bracelets during her final days, sold them and raised $250 for Kohler.
“The selflessness of these kids, if the world would be like this, there would be no more wars,” Kohler said.
He saw that strength in his son, too. Kohler said Ayden had a sort of kid power, even though he was slowly dying.
“He was mature beyond his years,” Kohler said. “We were very close. We had a bond that I’ve never come across.”
Kohler said Ayden used to tell him, “I just want to go to a better place so I can run again.”
Fundraiser: A ribbon-cutting at 5 p.m. Thursday, Nov. 8, at Stony Run Brew House, 3605 E. Market St., will open doors to a fundraising event to support 4AydenStrong, Stony Run owner Bob Elmiger said.
“He’s trying to get to the root — what is the cause,” Elmiger noted of Kohler’s efforts. “(Ayden) can possibly continue to live through the other children who could be saved from this (disease).”
Elmiger didn’t have a close relationship with Ayden, but he added that he learned a lot about Ayden when he was ill.
“There wasn’t fear,” he said. “Of course, from time to time, we all do a 'why me?' He was a real trouper. I think what he did was gave other people a vision of how to be in a time of pain and hurting and in a time of sickness.
"There’s kind of a little legend that lives on.”
Elmiger said people like “beer and food,” which makes the ribbon-cutting a “really good opportunity” for them to raise money and awareness for the foundation.
“We feel that we will be able to help the foundation so much more,” Elmiger said.
Ten percent of sales and anything raised through the silent auction will go to the foundation, he confirmed. The fundraiser will run from 11 a.m. until 10 p.m.
Anyone interested in donating a door prize or to the silent auction can email email@example.com or call 717-755-7549.