Fifteen-year-old Neil Brochu has wanted to see his beloved Montreal Canadiens play live for years.
The Newmarket family has faced hurdles making that happen, according to his father, Mike Brochu. Neil has Batten Disease, a nervous system disorder. Regular treatments, and the pandemic, made a game difficult to attend.
But the family resolved to make it happen this year. After a plea to the Newmarket community on Facebook, the family was connected to get tickets for box seats and are due to attend a Canadiens game in Montreal Nov. 20.
“When we told him that this is what was going to happen, he was absolutely stunned and amazed," Brochu said. "It’s kind of a dream come true for him to be able to attend a game there."
The family put the call out in a Newmarket Facebook group Oct. 17, asking for help to get connected to get to see a game. Within a couple of days, they had secured box seat tickets and a hotel stay, through an organization the family said wished to remain anonymous. The family said the Montreal Canadiens Children's Foundation also reached out to provide tickets, but the family declined the latter offer, not wanting to take the opportunity from another child when they already had seats.
“You incredible village, (you) didn’t just send ripples out to your contacts, it was more like tidal waves,” Neil's mother Leah Brochu wrote on Facebook Oct. 19, garnering more than 1,300 reactions. “We are so humbled and deeply grateful to everyone who shared that post, commented with innovative and creative ideas, or even just commented or messaged me personally, with words and wishes of love and support for Neil and our family.”
“It takes a village,” Newmarket local Jackie Playter, who helped make the connection with the right organization, said on Facebook. “And we have the best village.”
The family has managed the disease for years. They moved to Ohio after Neil was first diagnosed at age 11 to get emergent treatment. The disease causes physical decline and is eventually fatal, though Neil was the first Canadian to get enzyme replacement therapy, meant to slow the disease.
“Gradually (you) lose the physical ability, but there’s also a childhood dementia that’s involved as well,” Mike Brochu said. “Fortunately, through the school system and outside the school system, we’ve been able to tap into a lot of incredible people that have offered a lot of resources for Neil.”
The family moved from Ohio to Holland’s Landing after arranging for treatment to continue at SickKids in Toronto. The care is ongoing with regular trips to SickKids, but Brochu said his son carries on.
“His courage is incredible to see. The amazing thing about Neil, he’s got such a pure disposition that people that really take the time to know him, fall in love with him and it’s incredible to watch,” he said. “As a dad, I’m incredibly proud of what he’s been able to accomplish in the fight against the disease.”
The family has received community support in the past, raising more than $46,000 on a GoFundMe page to help with costs, such as converting their van to be fully wheelchair accessible.
Doctors are currently managing a bacterial infection at the port they used to access Neil’s brain, Brochu said, which has kept him in hospital for several days. But his father said that should not keep the family away from game day.
“I hope Montreal wins. That would really make Neil happy,” Brochu said. “If not, it’s going to be an amazing experience no matter what the outcome of the game is.”
He said it is a great community to be a part of, and their family has received an “amazing outpouring of love and support.”
But he said it is important to be aware when interacting with those with disabilities.
“One struggle that people who have disabilities often encounter is people tend to slip past them or look through them. And they’re not invisible, they’re incredible human beings who have undergone probably more than most people during a lifetime,” he said. “They’re incredibly resilient and strong. We need to really take the time to value them, and value the contributions that they can make to our society as a whole."