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Community helps family get "once in a lifetime" hockey experience

Brochu family gets help to see Montreal Canadiens, visit from Stanley Cup

After an unforgettable weekend watching their beloved Montreal Canadiens play live, Neil Brochu was treated to one last surprise Nov. 23.

Stanley Cup keeper Mike Bolt brought the famed trophy to the 15-year-old's Holland Landing home. It came as a result of a Newmarket community member, Rex Taylor, pulling some strings for the teen suffering from Batten Disease.

After getting to embrace hockey’s most famous trophy, his mother, Leah Brochu said they practically had to pry him off it. She said the Newmarket community is incredibly connected, also getting her family box seats to a Canadiens game just because she asked for help on Facebook Oct. 17.

“Newmarket’s the centre of the world maybe because all of that happened just from that one (Facebook) post I made. All these gifts were given,” she said. “This disease, it’s ravenous, and it’s horrible what it does to him. Something like this, I think the excitement gave him so much energy … You could see it in his eyes. He was overwhelmed. It was incredible to give this gift to him, and it was once in a lifetime.” 

The Newmarket family has worked to manage their son’s condition, a rare nervous system disorder in children that can cause cognitive impairment, blindness, and is eventually fatal. After moving to Ohio to get emerging new treatments a few years ago, they moved back to York Region and arranged to continue treatment at SickKids Hospital in Toronto. 

Brochu sought to give her son a chance to see his beloved Montreal Canadiens in person, something the family had been unable to do due to treatments and the pandemic. But after getting donated box seats, they travelled to Montreal Nov. 20 and watched as the team defeated the Nashville Predators 6-3.

“He was so excited,” she said. “He was with his people.” 

The family was treated to everything from a jumbotron shoutout, a visit with team mascot Youppi!, and a goodie bag from the Montreal Canadiens Children’s Foundation. The team even had an appearance and a mention on Hockey Night in Canada.

“We had a lot of people in Newmarket who reached out to a lot of their contacts with different parts of the Montreal Canadiens organization. A lot of little things happen, and I think a lot of it was a lot of different people pulling strings all at the same time,” Brochu said. 

“When we were alerted to Neil and his journey, it was a story that Hockey Night in Canada wanted to tell,” producer Scott Lennox said. “Demonstrate another example of how strong the bond of the hockey community is in our country.”

Brochu said it meant a lot to her family. She said they got to stay at a nice hotel — one with a fully accessible tub big enough to let Neil take a bubble bath he wanted, something generally impossible due to his condition.

“This is our reality. We live this every day. It’s not newsworthy, and it’s not anything unique. Batten Disease is such a huge part of our life," she said. “Some people that will come up and they’ll talk to us, and they ask, and I love that. I wish more people would do it, because people are a little afraid of people in wheelchairs.”

The Newmarket community has responded throughout the family’s journey, also raising more than $45,000 in a GoFundMe to help pay for expenses. Brochu’s recent posts have garnered hundreds of comments and reactions on social media.

“Having watched this story from the beginning I think we all feel a little connected to it,” one commenter said. “What an amazing community and an amazing boy! So glad he was able to have this experience.”

Treatments will continue for the teen, with regular visits to SickKids. The enzyme replacement therapy he receives has difficulties, with the risk of infection through the port used in his head. But so far, the benefits to slow the disease outweigh that, Brochu said.

She said she would like more public awareness of the condition, which might help with earlier diagnosis and treatments. 

“It doesn’t have much exposure out there at all. Even just knowing that people are learning the word Batten’s disease, that is something.”

Brochu said they will keep on providing for Neil and let him live the best life possible.

“As he declines, we’re just, we’re powerless over this part of it,” she said. “We just love him through it. Just do the best we can to make his life a good life.”