When Bill Kohler’s nine-year-old son, received some life changing news, his entire world was thrown upside down. Yet the brave young boy and his father refused to give up, and they held on for as long as they could, trying to have as normal a life as possible. But when Ayden told him, “I gotta quit,” what the father said next was incredibly heartbreaking.
In August 2016 Ayden Zeigler-Kohler was a regular 9 year old boy that lived with his family in York, Pennsylvania. Like many young boys his age, Ayden was extremely active and loved to play sports.
A Turn For The Worst
But one day the following month, Ayden and his family’s lives would never be the same again. The youngster had been on a fishing trip with his parents on the lake when he collapsed. His parents rushed him to a nearby hospital. The doctors told them that their son had suffered a concussion.
Never Be The Same Again
Over the next few days, Ayden’s condition began to deteriorate. He was losing his ability to speak and some of his motor skills. His parents were so so worried they could not sleep. That’s when Ayden’s dad, Bill Kohler, first realized that something was potentially very wrong with their little boy.
A Waiting Game
They took him back to the hospital the next day and the doctors gave him extensive tests to get to the bottom of what was going on. The results took a few days to come, and every day waiting for the result, his parents were beside themselves. They could not relax. What was wrong with their beloved son?
What Was The Diagnosis?
And it turned out that Bill was right to worry. They were called in as soon as the doctors received his scan results. They discovered a tumor in Ayden’s brain that stretched from his brain stem to his cerebellum. They then diagnosed him with a rare form of cancer known as intrinsic pontine glioma.
As they pulled into their driveway after receiving the news, Ayden could see kids playing at the school playground. He started to cry. He wanted to be a normal kid, he told his dad. Later, in his bedroom, Kohler tried to comfort his son.”What if I don’t get better, and die?” Ayden asked through tears.”No matter how this turns out, son, I will be by your side,” Kohler said. “The whole way.”
Even More Heart Wrenching News
If they thought that it could not get any worse, doctors told Bill, they estimated that little Ayden had only up to one year to live. So now all his father could do was watch Ayden deteriorate in front of his eyes. “He was so lethargic,” Bill told TODAY in March 2017. “I had to carry him everywhere. He couldn’t walk. He was losing motor function, constantly sleeping. The look in his eye was just a daze, like he wasn’t even there.”
Never Give Up
Of course, Ayden had medical care to try to limit the pain; radiation treatment helped halt the illness. Bill did everything he could to easy his son’s pain and to try make him live as normal as he could. He continued to play sports with him as much as possible, but it was very difficult for Ayden. Bill was continuously praying for his son and wanted to desperately ease his pain.
A Nightmare That Becomes Reality
However, in the end, any positive effects would only be temporary. Understandably, it was a heartbreaking time for the family. What do you do in that situation? He had to try remain strong for Ayden but it was extremely difficult, almost impossible in fact.
Ayden Saves His Father
It was especially overwhelming for dad Bill, as Bill and Ayden had always been close. In fact, the doting dad credits the little boy with saving his life. Prior to Ayden being born, Bill served in the Army for 17 years. And when he came home in 2006, the Iraq veteran struggled with depression and anxiety. The birth of his son cured his mental illness and pain and brought him so much joy.
Bill spoke in an interview about returning from Iraq. “I was isolated and started drinking pretty heavily,” Bill admitted to TODAY. “Nothing was going right for me… and then Ayden was born. I just threw myself into him. Once that happened, it was like a bunch of good things started happening. I finally got into the V.A., I started therapy.”
Never Give Up
As a result, Bill refused to give up his hope for Ayden. He even committed himself to researching the rare form of cancer his son had. Furthermore, he inquired about clinical trials with the hope that a medical breakthrough might save the boy.
Bill continued to throw himself into finding a way to make Ayden better. He spent many hours at their Springettsbury Township home applying for every clinical trial he could find. Again and again, he was denied. There was nothing they could do, the rejection letters said. “I was a medic in the war, you know, and you fix things,” Kohler said. “And this was something I couldn’t even touch.” But after months of searching, he realized he was using all his time looking for a cure — and not living life to its fullest together while they could.
Wished It Could Be Different
After Ayden was diagnosed, Kohler would lay his hands on his son’s head before bed, willing the cancer to leave his little boy and enter him instead — wanting to save his son’s life as Ayden had done for him. Many people in the community came together and created a GoFundMe page in order to raise money for Ayden, and thank Bill for fighting for their country.
Cherishing Precious Time
In the meantime, the family focused on squeezing as much life as they could in between doctor’s appointments and chemotherapy. Indeed, they worked towards creating cherished memories with Ayden by ticking off items on his bucket list. They wanted to make sure he got to do everything that he dreamt of.
Some Dreams Come True
And to help fund the little boy’s dreams, friends and loved ones donated almost $90,000 on the GoFundMe page. As a result, the family enjoyed many fishing and hunting expeditions together. In fact, Ayden would spend as much time in nature as he could, as it was one of his most cherished places to be in.
One particularly poignant moment for the family came when the Pennsylvania Game Commission arranged for Ayden to visit some bear cubs. Since Ayden could no longer walk at that point, Bill carried him to the bears, who nuzzled the boy’s face and cuddled into him.
Raising His Hope In The Fateful Months
Ayden’s social worker helped him create a wish book — a way to open dialogue about what Ayden wanted for his life. It also helped Kohler to make sure that he was doing whatever he could to give some choice to his son, who had so many choices taken away from him. A question in the book reads: “If I am very sick and may die I wish to be:” Ayden finished the sentence: “in the woods.”
Offers Come Flooding In
Ayden also enjoyed football and basketball games, and he even got to meet Pittsburgh Steelers player Ben Roethlisberger. Meanwhile, the Harlem Globetrotters and WWE offered the youngster tickets to future events.
Keeping Busy To Forget The Pain
Bill took Ayden to go shooting at Xtreme Archery in Springettsbury Township. Even though he could not walk very well at this time, he had a special chair made, with extending arms so that he was able to stabilize the bow so Ayden can still shoot.
One Of His Last
“All right, heartbreaker, are you ready?” Kohler asked him. “Aim small, miss small.” Ayden lined up his shot, his arm wobbling slightly as he steadied it against his chair. He took one breath, determined to make the shot. Then he squeezed the trigger. The arrow pierced the lungs of the paper hog on a target at the end of the range at Xtreme Archery. A small smile spread across the boy’s face — just for a brief moment before it disappeared. These were the moments they wanted to embrace for as long as they could.
Cramming In As Much As They Can
“We’re trying to cram a lifetime into a few months is what we’re trying to do,” Kohler said. The community has rallied around Ayden. He’s been a special guest at football and basketball games and went on a fishing trip in Florida. This winter he shot his first buck. “It was a perfect shot,” Kohler said. “That was a proud dad moment right there.” Hunting and being out in the woods are where Kohler and his son find moments of peace. It’s those moments they were desperately trying to hold on to.
The Community Chips In
Ayden also received two gifts sent from Thomas Merkle, the 2015 GameTimePA.com YAIAA offensive player of the year who set the county passing record while at York Suburban. Ayden an obsessive football fan was over the moon to receive a signed photo of his hero. “The community has been amazing and such a help,” Bill said. “People just coming over to see Ayden give him moral support and that’s the biggest thing we can ask for.”
However, Ayden would sadly never get to see the Harlem Globetrotters. In March 2017 his health took a turn for the worse. He eventually lost the ability to walk and eat. What he said then next to his father broke Bill’s heart.
Just 4 Words
After months of torture, but also months of doing wonderful things thanks to the donations from so many kind people, Ayden was thankful for the time he had been given, but was exhausted and didn’t feel like he had the power to push on for much longer. So finally he told his heartbroken father, “Dad, I gotta quit.”
Dagger To The Heart
It was the moment that Bill had dreaded, but he knew his little boy had done all he could. “If you’ve fought as much as you can and as hard as you can and you feel you fought that hard, I promise you it’s okay to quit,” he told his son.
Rested In Peace
Little Ayden later died at home with his family present. It had been just seven months since his diagnosis, and the child was just ten years old. At the time, Bill had been preparing to talk on camera about his family’s heartache.
Eaten With Regret
However, after hearing of his son’s passing, he abandoned his filming and forgot to turn off his microphone. Consequently, the device captured his final, heartbreaking conversation with his son. “I’m sorry that I couldn’t do more,” he whispered to his deceased baby boy.
Permission To Go
“You wanted to be in a better place. Now you can go there. Go run again. Play again,” Bill urged his beloved child. “You’ve given me the purpose in my life. I won’t let you down. I love you, son.”
The battle for their son’s life was lost, but Ayden’s parents continue to fight for other children with the same condition. So while they may not have been able to save their beloved boy, they hope in the future that other parents will be spared the tragedy they’ve endured.