Bill Kohler of York, Pennsylvania has seen just about everything.
A medic in the Iraq war, Bill spent countless hours saving lives and fixing the wounded soldiers around him, all against a chaotic, violent backdrop.
After sustaining multiple injuries in battle and being honorably discharged, he describes the years after as a personal “falling in the cracks.” An ongoing struggle with alcohol left him debilitated and numb. That is, until his son Ayden was born.
They have been the best of friends ever since, with Bill being Ayden’s advocate in every possible way you could imagine. Bill’s passionate love of his country has also trickled down to Ayden, who had memorized the first several constitutional amendments at only 3 years old. Whether it’s an adventure outdoors or an athletic game, Bill and Ayden have been walking through life hand-in-hand for every important moment.
But then they received devastating news that would change their life forever.
Late last August, Ayden collapsed during a football practice from what was believed to have been a concussion. Further testing revealed that Ayden had two tumors — one on his cerebellum and the other on his brain stem. Known as Diffuse Intrinsic Pontine Glioma (DIPG), this aggressive form of brain cancer can affect mobility, speech, and other critical functions. According to the Lyla Nsouli Foundation, only 300 children are diagnosed in the U.S. each year with DIPG, and they often lose their battle within a year. Ayden was 9 years old when he was diagnosed.
For Bill, it took months of fighting against the tide of his son’s relentless disease before he would decide to instead focus on the most important thing in front of him — his son. What would transpire in those months will leave any parent reading this proud to know a father like Bill Kohler, a man who has helped his son live the boldest and most eventful life he possibly can in what little time he has left.
After coming to grips with the terrifying news, Bill did what he does best in life — rally to help fix the situation. Whether it was reaching out for every single clinical trial he could think of or speaking to anyone in the cancer community who would listen, Bill has stopped at nothing to make sure his son’s disease is very much seen and heard. It is his hope that in the sharing, people will learn about DIPG and help fight for it to receive the critical funding it needs to find a cure. What has happened in the process of Bill’s efforts is the miracle of a community rallying together to make sure Bill and his family are seen and heard.
“As we had radiation treatments every day for six weeks, the community brought us dinners. The sports community helped my wife get Ayden’s room handicap-accessible so he could come home from the hospital. One of the football commissioners set up his GoFundMe page and manages it for us. These are just a few examples of how the community has come together,” he tells Babble. “Now since Ayden’s story has broke all over the nation, I see that we as Americans still believe in helping one another.”
Despite being very transparent with Ayden about nearly every aspect of his disease, Bill has chosen to remain steadfast in keeping Ayden from learning that his time is heartbreakingly limited. As tough as this has been for Bill to do, it is a choice that he feels will allow Ayden to focus on what really matters — the family around him, the activities he looks forward to, and the community surrounding him with open arms.
“He doesn’t know that he’s terminal. We tell him that people do die from this, but that doesn’t stop us. That’s why we fight,” he says.
One of the tools that has helped Bill and his son cope with everything is a “Wish Book” from his social worker. Ayden records his wishes and hopes, which has allowed Bill to get a true picture of what his son really wants out of life. Bill recalls, “It gave me an insight into what he wanted. He wanted to make a lot of his own decisions.”
One of those decisions has been to stand during the national anthem at sports games he attends. Although Ayden cannot fully stand on his own most of the time, Bill makes sure to prop him up for the song at the beginning of every single game. He tells Babble, “He used to be able to run and walk. Now, I am his legs, his hands, or anything he needs me to be.”
But Bill hasn’t stopped there.
Just this week, his brave, strong boy got to attend a Golden State Warriors game. He’s also been an honorary member of the Penn State basketball team. He just received an invitation from the Harlem Globetrotters to watch them live. Ayden’s had his hair sport a myriad of colors. He’s gone fly fishing, target shooting, and traveled to different cities. He’s been enjoying lively video game tournaments with his family and friends. And just last month, Pennsylvania State Representative Seth Grove welcomed Ayden on the House Floor, to a packed room. Although it is hard for Bill and his wife, Cathy, to schedule activities too far in advance, they are doing everything they can to pack Ayden’s days with as much excitement, joy, and meaning as possible.
When asked what his son has taught him about life since his diagnosis, Bill says:
“Coming back from Iraq, Ayden brought me out of a hole, and my whole life has been about him — raising him to be a strong, well rounded individual. He has shown me that those values have been instilled and have come to fruition. Given his diagnosis, I have tried to put our life plans into a short time. He has shown the entire community that he can and will fight to get through this.”
But Ayden’s fight is one that, for every child who has suffered from DIPG before him, has an untimely end. And his dad wants parents everywhere to know that a fate like Ayden’s can change with more public awareness. Since DIPG is considered a rare cancer in children, there is little government funding to pay for the research necessary to find a cure.
Bill and Ayden are an inspiration to us all. “We must keep fighting, never lose hope, and always know there is a reason for everything,” says Bill.
h/t: York Daily Record