A teenager’s leukemia struggle – and his mature attitude through his arduous treatment – impressed his University of Colorado Cancer Center medical team and spurred his mother to launch a foundation to raise money for cancer research. And now that struggle is providing inspiration for a cycling team as it prepares for the 2024 Courage Classic Bicycle Tour fundraiser for Children’s Hospital Colorado.
In December 2018, Will Maniatis was a healthy, vital, strong Colorado kid – the youngest of three brothers – who had just turned 14 and was “just not feeling right,” he told his parents. There was no history of cancer in the family. Then came his diagnosis of an aggressive subtype of acute myeloid leukemia (AML), a cancer that starts in the bone marrow and can spread to other parts of the body. AML is one of the most common types of leukemia in adults, but it is less common among children.
“He was still just a kid when he was diagnosed,” says Will’s mother, Claudia Maniatis. “He was all the things that a teenager is – trying to bridge the gap between being a little kid and stepping into the next phase of his life, very focused on his friends and pursuing things that were important to him. But he was still very much about family.”
The diagnosis, Claudia says, led to “hail Mary after hail Mary”: Six straight months as an inpatient at Children’s Colorado, “extremely harsh” chemotherapy, severe side effects, weight loss, a clinical trial, a transplant of bone marrow donated by Will’s eldest brother, periods of recovery and then a relapse, salvage chemo, an encouraging response and then a fierce comeback of the cancer.
Finally, with no viable options left, “Will chose to live out the rest of his days at home, the place he loved best, surrounded by those he treasured most, his family and friends,” his mother wrote on a web page dedicated to her son. Exactly 14 months after he was diagnosed, she wrote, “Will laid down his sword and ended his fight against AML.”
He died February 18, 2020 – “forever 15 and forever loved,” as his mom puts it.
→ More about Will Maniatis’ life and cancer struggle
During his struggle, “Will said how he really wanted to make a difference for other kids who had cancer,” Claudia says. “At one point he started a T-shirt business, and he was donating the proceeds to childhood cancer charities. And then, when he was in hospice care, we talked about how I could take the torch from him and keep going forward in his memory.”
And so Shortly after Will’s death in 2020, Claudia launched the WillStrong Cancer Foundation to raise funds for cancer research programs at Children’s Colorado.
Photos above: Left, Will Maniatis in the hospital with his nurse, Jennifer Lamb, MSN, RN. Right: Will in the hospital. Photos courtesy of Claudia Maniatis.
Keeping stories alive
Following Will’s death, Claudia got into cycling. She met the leaders of the Wheels of Justice cycling team, which rides in the Courage Classic each year, and in 2022 and 2023 she accompanied the team in the annual fundraiser. She plans to ride with Wheels of Justice again this year, and her foundation is a sponsor of the team.
Wheels of Justice is one of many teams in the two-day annual cycling event, which raises funds for Children’s Colorado, the region’s only nonprofit pediatric hospital. This year’s ride will be held July 20-21 on several routes beginning and ending at Copper Mountain Resort in the Colorado Rockies. Since 1990, the annual event has raised more than $59 million for Children’s Colorado.
→ Find out how to ride, donate or sponsor in the Courage Classic
Each year, Wheels of Justice dedicates its ride to a child who battled cancer and creates a custom jersey recognizing the child. This year they’re riding for Will.
“Amber Dunlap is our team captain,” Claudia says. “When she asked if the team could ride for Will this year, I thought of Will and all of the other children that Wheels of Justice has ridden for, kids who were just getting started and never had a chance to make their own mark in the world. Their stories fade into the background. This is so meaningful because it’s a really cool way to honor these kids and keep their stories alive.”
Wheels of Justice focuses its Courage Classic fundraising on Children’s Colorado’s Center for Cancer and Blood Disorders (CCBD), whose pediatric oncologists are part of the CU Cancer Center. The money it raises through pledges funds primary pediatric oncologic research as well as mental health and wellness care for families and patients dealing with a diagnosis of cancer or blood disorders.
When Wheels of Justice first rode in the Courage Classic in 2006, the team mostly consisted of legal professionals (hence the name). That first year, 125 riders raised $130,000.
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Today, Wheels of Justice has 250 active riders. It still has several dozen legal professionals either riding or sponsoring the team, but it also includes about 50 employees of the CCBD, as well as patients and their family members and friends. CU Cancer Center members, led by Deputy Director James DeGregori, PhD, are riding with Wheels of Justice this year as a sub-team.
Through 2023, the team has raised more than $6.25 million for the CCBD, most of it through pledges to individual riders, plus corporate sponsorship. The 2024 team target is $750,000.
Photos above: Left: Will Maniatis, center, with his older brothers Stathi and Jack, two months before he died. Right: Will with his parents, Claudia and Stuva Maniatis. Photos courtesy of Claudia Maniatis.
Shielding his family
Claudia Maniatis talks of her son’s courage and determination as he went through treatment.
“He was beyond his years, for sure, the way he handled himself,” she says. “He wanted very much to be part of it. He wanted agency over the decisions that were being made. He wanted his care team to do their rounds in his room so he could look them in the eye. He wanted to know exactly what was going on – progress or not progress. He wanted to ask questions and get real answers.”
She adds: “It’s scary to think that your body is betraying you like that. But he really wanted to face reality and make choices.”
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Claudia says Will would frequently email his main oncologist – CU Cancer Center member Kelly Maloney, MD, a pediatric hematology-oncology specialist – “and say, ‘Hey, we need to have a meeting.’ She would come and talk to him, and he would be really forthright – ‘I want to know exactly what the odds are. What does this mean? How will this make me feel?’”
“He was remarkable, so different from many teenagers,” Maloney says. “Even at his age, where a lot of kids would not participate much in their health care, he wanted to be a very active participant. He didn’t want his parents alone to make decisions for him.”
Maloney recalls that Will was not sleeping well in the hospital, “so I frequently woke up to a Will Maniatis email, asking me specific questions. Middle-of-the-night musings, I called them. I think it allowed him freedom to ask hard questions. Sometimes he would write, ‘This is just for you.’ That was his way of shielding his parents and his siblings from overly worrying about him. He took a lot of the burden upon himself. He wanted to keep everyone else as happy as he could keep them. He was just an amazing young person.”
‘A super nice guy’
Among the Wheels of Justice team members who will be riding in Will’s memory is Brandon Nuechterlein, PA-C, who also was on Will’s care team at Children’s Colorado as a physician’s assistant in the bone marrow transplantation program. Nuechterlein, who is team leader Amber Dunlap’s brother, says this will be at least his 13th year of riding in the Courage Classic.
“He was always a super nice guy,” Nuechterlein says of Will. “He wanted to take care of others and be involved in the community, and even if he didn’t survive, he wanted to give back. Claudia and the family have gone on to be advocates for people with leukemia, raising funds. Will’s legacy is carried on in that way. We need more money and more research to come up with innovative treatment options for these patients.”
Nuechterlein had his own treatment journey at Children’s Colorado that started 26 years ago when he was diagnosed with leukemia. A bone marrow transplant followed. It was that experience that led him to decide he wanted a career in medicine and to work at the hospital that saved his life. “I was almost the same age as Will when I was diagnosed, so that definitely hit home,” he says.
Nuechterlein notes that some of the team riders are young cancer survivors. “There’s nothing more inspiring than when some kid with one leg starts passing you going up the mountain. I do a lot of late-effects research on trying to minimize toxicity after bone-marrow transplants, and one of the most powerful things we’ve found is intense exercise. This is a great avenue for our riders to take care of themselves.”
Photos above: The special jersey commemorating Will Maniatis that Wheels of Justice riders will wear this year in the Courage Classic. The helmet emblem is also the symbol of the WillStrong Cancer Foundation, the fundraising group founded by his mother. Photos courtesy of Amber Dunlap | Wheels of Justice.
Trying to find something better
Maloney notes that Children’s Colorado has a top 10 nationally ranked pediatric oncology program. At the hospital’s CCBD, she says, “we offer a gamut of resources and cutting-edge therapies. We have an experimental therapeutics program, we have cellular therapies, we have bone marrow transplantation, and we have a great wellness program, which is key for doing our best for kids. Not many other centers can rival all that.”
She also notes that Children’s Colorado is adjacent to UCHealth University of Colorado Hospital on the CU Anschutz Medical Campus, providing side-by-side treatment options for young-adult patients depending on their needs, and that both hospitals partner with the university and the CU Cancer Center. “It’s a pretty amazing place,” she says.
Maloney credits Claudia Maniatis with being “a great partner with us who looks for opportunities to make other people’s lives better. We all need more people like that in our lives. And she’s honoring Will’s wishes, which were to keep trying to find something better.”
Asked what parents should do if they find themselves in a situation like the Maniatis family, Maloney says: “They should feel comfortable asking their provider to look nationwide to find if there’s something better as a treatment, something that can make a difference. And they should encourage their teen to be a part of their health care decisions. Kids know more about what’s going on with their bodies than we give them credit for. It takes support from parents for a teen to ask the hard questions on their mind.”
She adds: “I also think it’s important to make joy and fun out of what you can, even in tough situations. It helps you get through therapy. Making sure you’re making good memories along the way is important.”
And Claudia’s advice to parents? “Don’t be afraid you can’t handle it. You can handle so much more than you realize.”
Photos at top: Center, Will Maniatis. Left, Claudia Maniatis on a Wheels of Justice ride. Right, the Wheels of Justice team on a previous ride. Photos courtesy of Claudia Maniatis (center), Amber Dunlap | Wheels of Justice (left and right).
