“Will fought one hell of a fight for seven years but he left us peacefully early this afternoon. He can now be the boy we always dreamed him to be able to be. He can run around, shoot hoops, and just be a normal 7 year old boy.” This was the message posted to the “Team Will: Where there’s a Will there’s a way” Facebook page Saturday afternoon, an account which has been maintained by Pleasant Valley High School science teacher Chris Kohn and his wife, Meghan, for years. The page was created to keep friends informed of their courageous son, Will, and his health updates. As of Saturday, the page had over 15,000 followers and has reached people all over the world, many of whom the Kohns have never met.
Will Kohn’s extraordinary seven-year battle came to an end on Saturday, Jan. 27. Will was born on Nov. 12, 2010 with a rare birth defect known as hypoplastic left heart syndrome which results in the left side of the heart being underdeveloped. Functioning as the area that pumps the oxygenated blood to the rest of the body, his journey was uphill from the start.
At just six weeks old, Will underwent his first open heart surgery and by eight months old, he had undergone his third. On the outside, Will appeared a normal young boy–he was a fan of construction equipment, bugs, legos, his Xbox, Minecraft, and John Deere–but on the inside, his heart could not keep up with his body. In 2014, Will was placed on the transplant list after discovering that his body could not handle the surgery he needed.
Meanwhile, Will continued to go about his life, losing his first teeth, attending his first day of kindergarten at Riverdale Heights, cheering on the Iowa Hawkeyes, and becoming the PV Spartan football team’s number one fan. His father, Chris Kohn, loved having little Will on the sidelines as he coached the freshmen team.
Will thrived in kindergarten where he loved his friends and was excited to learn how to read. His kindergarten teacher, Lisa Bradley, said, “Will was always full of energy and enthusiasm. His smile would light up the room and anyone near him couldn’t help but be happy and smile also.” Will and his teacher spent many recesses together, since he couldn’t go outside to play. “He amazed me with his grown-up understanding of his health,” she said. “Chris and Meghan didn’t let his health be an excuse. There were things he couldn’t do but he was expected to give 110% in everything he could. Will was one of the strongest kids I have ever met. He was determined in what he did and he wasn’t going to let anything stop him,” Bradley added.
Despite his determination, life became a waiting game for Will and his parents. Starting in 2016, Will’s condition began to deteriorate as the need for a new heart came with increasing exigency. After several years riddled with battles to stabilize and maintain his health as his body began to shut down, Will finally received his new heart on Sept. 13, 2017.
The waiting game was over, “the call” had finally come, but the uphill battle remained relentless. After defying so many odds with admirable strength, Will reached another mountain to climb on Jan. 9, 2018 when he was diagnosed with stage four large B-cell lymphoma. The cancer had spread to his GI system, liver, neck, jaw and brain. His weak immune system and tired body made the success of cancer treatment impossible. This diagnosis would become the one battle Will could not beat. Less than three weeks later, Will passed away.
Will endured seven years of uphill battles. Nevertheless, he and his parents never seemed to waver. The little warrior received a lifetime worth of love, support, and unparalleled courage at the hands of his parents, Chris and Meghan Kohn, who matched the fortitude, hope and courage displayed by their son. Together only for the weekends for many of Will’s battles, the family adjusted to their “normal” with inspiring positivity. Brant Clausen, a fellow science teacher at the high school, said “Despite the enormous load on his shoulders, [Chris] Kohn never used his situation to be any less of a husband, coach or teacher–and Meg put her life on hold to give her child everything he deserved. Both of them are the epitome of grace.”
Met with challenge after challenge, Will’s parents were never far from their son’s side and their strength and sacrifices for the health of their son should not go unmentioned. Countless friends have commented on young Will’s fighting spirit despite his overwhelming odds–and it is not hard for one to see where he inherited his strength. Stacie Giesecke, a friend to the family and a co-worker to Chris, said “Will’s courage, personality, and determination are a true reflection of his parents.” Giesicke and her sister, math teacher Nikki Pitcher, have been close to the Kohns for 20 years. They say the strength of Chris and Meghan’s marriage is something to admire, and they marveled at the kind of parents the Kohns had become. “The sacrifices they made are unreal. Meghan never left Will’s side. She was his mom, nurse and biggest cheerleader,” Giesecke said. “[Chris] had to balance his time between his family and work–his students and players are so important to him,” she added. Still, they somehow juggled all of their responsibilities with their main priority–Will. “They never gave up,” Giesecke said.
Spartan students, faculty, parents, and community members have spent the last seven years praying and hoping, then hearing about Will’s uncanny ability to make it through just about any curve ball thrown his way. Now that same community is finding it jarring to realize that this brave boy’s journey has come to an end. Will’s stubbornness—his refusal to give in even after his body had taken so much—is the epitome of the “total effort” the Pleasant Valley community seeks to replicate. His tenacity, his fighting spirit, that came to define him is an inspiration to the entire community. Even as it has lost one of its strongest members, Spartan Nation will continue striving to carry on Will’s example of determination and will not forget the total effort that Will Kohn put into each and every day of his exceptional life.
Our thoughts, prayers, and deepest condolences go out to the Kohn family as they deal with the loss of their courageous son. There is no doubt that countless people will mourn his passing or that he was fiercely loved and will be dearly missed.
The strength and courage of a 7-year-old boy has united countless people from different walks of life, all hoping and praying for the same outcome. Will lost the battle with his health, but his ability to inspire the thousands of people he did in his seven short years cannot be overlooked. Bradley was one of those thousands. She said “Will taught me how precious life is and how important it is to live and have fun at the same time. He lived life to the fullest each and every day. He touched my heart deeply.” When things seem impossible or when times get tough, the examples of bravery, courage and tenacity we have from young Will should remind us of this: Where there is a Will, there is a way.
Rest In Peace, Will Kohn.