The Ben Stelter Fund is a legacy his family, Connor McDavid and the Oilers will proudly carry

Publish date: 2024-06-02

Every night before bed, 4-year-old Emmy Stelter points up at the brightest star in the sky to wish her brother Ben sweet dreams.

Ben’s parents, Mike and Lea, and his older sister Dylan, 15, hear his infectious giggle playing on a loop in their heads.

There are all sorts of ways the Stelter family remembers Ben, who was 6 years old when he died of glioblastoma last August.

The Stelters shared Ben with so many people last spring as he became a good-luck charm for his beloved Oilers. To the public, he’s remembered as the brave boy who won over Oilers fans and the hockey world at large for the way he faced cancer.

Now, the family wants his legacy to live on through the Ben Stelter Fund.

“We knew that we had to give back for Ben,” Mike said.

An Oilers-run 50/50 wraps up Friday; it has injected money and attention into Ben’s fund. The winner will be announced that night, and organizers are hoping the jackpot reaches $5 million. With that comes optimism that the little boy who inspired so many will be the face behind an initiative that leaves a lasting mark for years to come.

Winter was turning to spring in March 2021, so Mike and Ben went looking for a trailer they could use for upcoming summertime adventures. It was the last special moment the father and son would spend together with Ben as a healthy child.

The next day, Ben was playing hockey by himself in the basement of the family’s St. Albert home when he went upstairs to tell his dad that he didn’t feel right.

Kids have a penchant to complain about minor inconveniences all the time, so Mike figured he’d just have Ben lie down on the couch and rest. However, Ben became nauseous and vomited. Then, Mike said, “Ben wasn’t there anymore.” He called 911.

Ben was rushed to the hospital in an ambulance. Tests and scans were run, and the Stelter family was given the devastating news: Ben, not even 5 years old, had a tumour in his brain. He had surgery two days later — at which point they were told the tumour was cancerous and terminal.

“There’s nothing to prepare you for that. It’s the worst news you could get. And it was the worst after the worst,” Mike said.

The days and weeks that followed were a haze for Ben’s parents. Mike and Lea tried to stay positive, but he recalls each time they would get gut-wrenching updates from doctors. They’d privately share a moment of pain together before composing themselves for Ben. Seeing him always gave them a lift.

“Most people fighting for their life aren’t doing so with a smile on their face or with jokes coming out of their mouth the whole time,” Mike said. “It made moments like those easier because he was so happy.

“But it also crushed you even more because he was so happy, and you knew what he was dealing with.”

Ben had radiation treatment in April and May but got out of the hospital in time for his fifth birthday, May 27. Knowing this could be his last one, Mike and Lea wanted to ensure it was truly special.

Ben loved fancy sports cars, specifically Corvettes. With the help of Lea’s coworkers, his parents arranged to have Horsepower for Hope, an exotic car club, parade 100 hot rods down the road of their home. Ben waved enthusiastically and yelled “thank you” as the vehicles inched along.

One of the drivers that day was Ashif Mawji, who found out about the parade ahead of time on Facebook. As chair of the Edmonton Police Foundation, Mawji had the Edmonton Police Service arrange an escort.

Mawji was driving his Ferrari in the motorcade that day. A devout Oilers fan and an original board member of the Oilers Community Foundation, Mawji had his car decked out in decals of Oilers superstars Connor McDavid and Leon Draisaitl on each side and goaltender Mike Smith on the hood. (Smith would later be replaced by Ben.)

Mawji, hearing that Ben was a huge McDavid fan, brought him a signed jersey of the Oilers captain — which was donated by the EPS. If there was something Ben liked more than cars, it was his favourite hockey team. Mike said he could identify the Oilers logo out in public before his first birthday. And no one topped McDavid.

“He just jumped,” Mawji said, laughing. “He and his dad asked me to stop, so they could take a picture. It was just his giggle. He was so excited to see Connor on the car.”

An MRI in November 2021 revealed that Ben’s tumour had returned, which led to another surgery in December.

Mawji, through his Oilers ties, is friends with McDavid, and McDavid didn’t hesitate to agree to Mawji’s request for a visit when he heard Ben’s story. Ben had met McDavid during an autograph signing at the West Edmonton Mall in January 2020. But that was for a couple of minutes on a day when McDavid was introduced to dozens of people.

A week after Ben’s surgery, McDavid surprised him at Mawji’s home, where the Stelters were waiting. Ben thought he was there to play with Mawji’s dog, Rocky, an English toy spaniel.

Ben was over the moon when he saw McDavid. They had to stay masked and distanced because of COVID, but those restrictions didn’t hinder an instant bond.

Ben's first visit and meeting with @cmcdavid97 at our house. We knew the world would fall in love with him just like Connor and our family did. Ben thought he was coming to play with our puppy. #BenOilersStrong @m_dan25 Rest Easy Ben. Your legacy will live forever. pic.twitter.com/Z7txXPikA6

— Ashif Mawji 🇺🇦 (@ashifmawji) August 11, 2022

“I believe everyone’s put on the Earth for some reason,” Mawji said. “I just happened to know Connor and helped make that connection.”

Ben gabbed on about how much he hated the rival Flames, especially Matthew Tkachuk. He had McDavid in stitches. He wanted to play mini-sticks.

“He was a little ball of energy,” McDavid said. “He was everywhere.

“You never know what to expect when you’re meeting a little guy like that. Sometimes they can be very shy, and it can be a bit awkward. But his personality just jumped right out. He had so much joy that it just oozed out of him.”

“You could see right away how Connor fell in love with Ben,” Mike said.

McDavid vowed to be there for the family from that point on.

Ben recovered well from that December 2021 surgery. He was playing hockey in the hospital with the nurses two days afterward. Then he got to meet McDavid.

But he had a rough ride after Christmas.

The chemotherapy continued into January. Ben spent a lot of time in the hospital that month as the tumour grew quickly. It became apparent that he had only months to live.

The family went to Disneyland, so he could see Mickey Mouse — the only creature that could rival McDavid in terms of an all-time favourite. He was given a steroid in February, which made him stronger, but had what Mike called “nasty side effects” like puffiness to the face.

Ben was feeling better. He still had his sense of humour. He told all kinds of jokes about his trip to doctors and nurses at the hospital.

A couple of weeks later, Mawji called Mike with a question.

“Can Ben skate?” he asked.

“Yeah, he can skate,” Mike replied.

Mawji offered the role of the pregame skater for an Oilers game.

Mike and Ben had to think about it … for a nanosecond. If Ben was strong enough to put on a pair of skates, he was going to be out there.

Ben had long dreamed of a moment like this. Whenever the national anthem blared over the PA system at school, he would sway and put his head down, imagining he was just like McDavid before a game.

Mike and Lea had him practise at the outdoor rink behind their home by holding an Oilers flag attached to a broomstick to ensure he was strong enough to carry the team colours onto the ice.

“He was pumped to go,” Mike said.

When they got to the rink on March 24, the flag the Oilers had for him was too big. Ben got to skate on the ice with his hockey stick instead. Even better, he thought.

Ben was introduced to the Edmonton crowd before a game against the Sharks. The fans erupted upon seeing the little guy take the ice from the Zamboni entrance behind the Edmonton net, wearing an orange Oilers sweater with the No. 22 and his name on the back.

“He would never wear another jersey other than Connor’s until that one came,” Mike said.

Ben skated gingerly around the goal, at which point McDavid met him and helped him toward the blue line.

It was a dream come true as Ben stood beside his hockey hero as the anthems were sung.

Mike laughs, recalling that Ben was miffed because he wanted to go slowly to soak up more applause but instead was carried off by a member of the ice crew.

After the Oilers defeated the Sharks 5-2, the spotlight shone further on Ben. He sat with Zach Hyman to do a postgame news conference in the team’s Hall of Fame room. Ben wore the motorcycle vest for the guy who “brought the juice” and the biker helmet for the player of the game.

Fans stood outside along 104 Avenue and chanted Ben’s name. Hyman stopped an answer to make sure Ben saw and heard his new fan club. Hyman got him to wave his hand at the crowd.

Later, Ben got the mic and made sure to praise Hyman’s work that night, but there were no mincing words when he was asked which Oilers player he liked the best. He gave Draisaitl some love. Of course, McDavid was his guy. Hyman took it all in stride.

A really nice moment after the game. Here’s Ben Stelter, 5, with Zach Hyman. Ben is battling cancer and was the pregame skater.

Ben said Hyman played “really good.” When asked who his favourite Oilers players are, Ben said McDavid and Draisaitl.

“No offence taken,” Hyman said. pic.twitter.com/XjkblMPRpJ

— Daniel Nugent-Bowman (@DNBsports) March 25, 2022

Hyman gave Ben the three children’s books he authored, but even that gift couldn’t get him to the top of the podium.

“Connor was No. 1,” Hyman said, laughing. “But it was cool to get to know him and be a part of his life.

“He captured the entire hockey world.”

Mike figured that wonderful night would be it. They could now make Ben as comfortable and happy as possible and watch the rest of the season together from home.

But Ben touched so many people on that March night. After watching him take the ice and seeing him at the mic, Oilers fans began offering the Stelters tickets to future games, and the team chipped in as well.

Ben went to game after game. The Oilers kept winning.

“He meant a lot to our group,” Ryan Nugent-Hopkins said. “He was a big inspiration for us. You see what he’s going through and what a big fan he was, and it makes you want to win for him.”

The Oilers would feature Ben midgame on the arena video screen. His call to “Play ‘La Bamba,’ baby” — a reference to the late dressing room attendant Joey Moss’ favourite song, which became the team’s celebratory tune after wins — became a rallying cry.

“People went nuts for it,” Mike said. “It was so cool.”

Ben wore that jersey he was given in March with No. 22 on it everywhere he went. He was more than a glorified mascot. He was part of the group.

“To have him in the room and on the ice, everyone was just loving him — loving having him around,” McDavid said. “He was having fun, so that nice of it was really nice.”

“They treated him like they were his friends,” Mike said.

Another trip to Disneyland meant Ben got to see the Oilers play the Kings in Los Angeles in Game 4 of the first round. He attended several home playoff games until the Oilers bowed out in the Western Conference finals to Colorado.

The Oilers came up short of their Stanley Cup hopes, but it was the furthest the team had gone in the postseason since their unexpected run to the Final in 2006.

And though the Oilers missed out on the championship, Mike felt they helped extend Ben’s life.

“His doctors told us after (Ben died) that he was supposed to be dead in February,” Mike said. “They don’t understand how he was still alive.

“We had a mini miracle from God where, it wasn’t the one we were hoping for, but it gave him those extra months to experience all this stuff. All that joy and the smile on his face, it kept him going — and it kept us going.”

Once the Oilers were eliminated, the Stelters drifted out of the spotlight.

Part of that was circumstantial; the Oilers were no longer playing, so Ben wasn’t at games and connecting with fans like he had for those two and a half months.

The other side of that, though, was intentional. Ben was getting sicker and sicker.

“It was emotional,” McDavid said. “From time to time, I would see him. I could see things getting progressively worse and worse. That made it really hard.”

Before leaving Edmonton for the summer, McDavid went to Mawji’s house while the Stelters were over. He wanted to visit Ben.

McDavid was there for a couple hours, and Ben kept dozing off because he was so tired. He no longer had the energy to chat much with his hockey hero.

When it was time for McDavid to leave, he pulled Mawji aside.

“Please, keep me informed,” McDavid told him. Mawji promised he would.

Mawji was on a family vacation in the Maritimes and was out for a drive on Aug. 9 when he saw Mike’s cellphone number pop up on his car screen. He figured Mike wasn’t calling with good news. He pulled over to take the call.

Mawji’s fears were confirmed. Mike told him Ben had died.

The first call Mawji made was to McDavid, who was vacationing in England.

“Ashif, just let me know when the funeral is and I’ll be there,” McDavid told him.

True to his word, McDavid was back in Edmonton as the city celebrated a life cut far too short.

“It was such a short time for the world to get to know Ben,” Mike said.

“He was such a fighter — and he went about it with so much joy and energy,” McDavid said. “You knew it was so hard for him. To see a young kid go through that — going through the worst thing you could go through — and he went about it so happily.”

The weeks that followed Ben’s death were unbearable for the Stelters.

“You can’t prepare for it,” Mike said. “You have this thought in your head of, ‘If the day ever comes, what is it going to be like?’ It’s a hundred times worse than you could imagine.

“Every kid is special, but he wasn’t a regular kid. He was my best friend. It just left the biggest void because he was so cool.”

As time passed, the Stelters thought they could use their experiences to make life better for other families enduring similar circumstances.

They’ve teamed up with Mawji, McDavid and the Oilers to create a fund in Ben’s name.

The fund has four pillars.

The first is creating special experiences for kids facing cancer. The second is reducing the financial burden for families that require advanced medical equipment at home for their kids. The third is funding outcome-based research to find better treatments and possible cures for glioblastoma and other pediatric cancers. And finally, there’s venture philanthropy — investing in unique, creative, innovative, entrepreneurial projects and entities that help with cancer treatments and potential cures.

The first two pillars are especially important to the Stelters.

Lea took a leave of absence from her job as a speech pathologist assistant when Ben was first diagnosed with cancer. Mike kept handling insurance claims but had to stop in December 2021 when the daily grind of dealing with angry customers became too much to handle. They want to support parents who need to stop working to care for a child.

And then there are the experiences. The last year and a half of Ben’s life represented some of the worst moments of Mike’s life. They were also some of the best moments, he said.

“It was just how much fun we got to see him have — and have with him,” Mike said.

“We realize kids that go through brain cancer — any cancer really — they’re warriors. They’re the toughest kids. They don’t all get this experience. It breaks our heart that other kids don’t get to do this cool stuff and get the spotlight like Ben got.”

Planning for their role on the fund has reinvigorated Mike and Lea.

“Ben was always about others. That’s what Mike, Lea, and the family are about now, too,” Mawji said. “I chat with Mike every day. There’s joy I can hear in his voice and there’s laughter every time we talk about this. It gives them a lot of energy.”

Mawji, a venture capitalist, is spearheading the financial backing of Ben’s fund. Almost $150,000 had been raised — with McDavid and the Mawji family teaming up to pledge $100,000 — before the Oilers launched a 50/50 drive last Tuesday, which culminates Friday.

“The response has been incredible,” Mike said. “Oil Country has shown up yet again to support Ben. This is going to help so many children fighting brain cancer.”

With the help of the 50/50 efforts, Mawji believes they’ll reach $1 million in funding by the summer. Once that happens, they’ll be able to get each of the four pillars off the ground. Mawji’s goal is to get the fund to raise between $2 million and $3 million annually.

“I have a lot of experience in raising money for different causes,” Mawji said. “I know we can do it here.”

As both Mawji and Mike suggest, having the backing of the Oilers and their passionate fans helps a ton. As does having someone like McDavid, the best player in the NHL, being so supportive.

“Ben’s very close to me and close to my heart — and I love what they’re trying to do,” McDavid said. “There are lots of families that are going through these types of situations — which is awful.

“If you can help just one kid down the road, that makes it all worthwhile.”

The Stelters are so thankful for the help with Ben’s fund. It’s given them direction and motivation after Ben’s death. Mike and Lea are private people who’d rather lay low, but that’s certainly not how their son was. They’re still learning how to adjust and be like Ben.

“Ben loved the spotlight. We absolutely hate it,” Mike said, chuckling. “We’ve made ourselves comfortable the odd time for when we have to do something if it’s to help the greater good. Now, we’re OK with it to try to grow the fund to put the spotlight on these other kids.”

Most importantly, this has all kept Ben’s memory alive.

“Starting Ben’s fund hasn’t healed us,” Mike said, “but it’s been a source of healing.”

(Top photo courtesy of Mike Stelter)

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The Ben Stelter Fund is a legacy his family, Connor McDavid and the Oilers will proudly carry