A pair of Montreal parents are paying tribute to their late son by raising money for the Montreal Children’s Hospital Foundation.
Parents Stephanie Bishara and Brian Phaneuf have run nearly 200 kilometers between them in the past month as part of the “Million Reasons Run.” With every foot hitting the pavement, their goal is to honour their son Myles.
“I think it’s about providing a legacy for Myles, because he can’t provide his own,” said Bishara.
When she was 20 weeks pregnant, an ultrasound revealed they would be having a boy, and that something was wrong.
Montreal Children’s Hospital fetal cardiologist Dr. Tiscar Cavalle delivered the diagnosis.
“It was something called double-outlet right ventricle with interrupted aortic arch. It’s one of the most complex malformations we can see,” she told Global News. “The prognosis was guarded just because of the complexity of the disease.”
She said about 1 in 100 babies are born with heart malformations, but this particular one is far more rare.
Staff at the Montreal Children’s Hospital told them Myles would need open heart surgery within days of being born.
Myles arrived on June 13th, 2022. They both got to hold him before he was rushed to the neonatal intensive care unit.
“He was perfect. He weighed six pounds, three ounces,” Bishara recounted.
Myles underwent a 16-hour open heart surgery, with an entire medical team rallying to repair the tiny vital organ.
“There were so many things to fix. It was very, very complicated,” said Cavalle.
They called him Myles, because the name means soldier. The little warrior fought the good fight with his parents by his side.
“They conducted themselves extremely well in the face of adversity and uncertainty,” said Cavelle. “They are a very fantastic, inspiring family.”
“You’ll do anything for your children. Even though it got bleaker, we didn’t want to leave any stone unturned. We wanted to make sure that we gave him every opportunity,” said Phaneuf.
After nine excruciating days on life support, his heart still wasn’t able to beat on its own. Doctors gave the parents the dreaded news.
“I never gave up on him until they told me I had to,” said Bishara.
Bishara and Phaneuf have dedicated themselves to forging a legacy of generosity in Myles’s memory.
Leading up to what would have been his second birthday this year, they enrolled in the Million Reasons Run, raising over $8,500 for the Montreal Children’s Hospital. It’s almost double their original goal. The fundraiser continues until the end of May.
“It’s an extremely proud moment for us, in that he’s bringing change and his life is meaningful,” said Phaneuf.
“It’s been very emotional to see the outpouring of love we’ve received. I could have never imagined raising this much,” said Bishara.
Dr. Cavalle says the money they raise will help every aspect of the complicated care needed to help children like Myles.
“I’m extremely proud of this family. I really carry them in my heart. There are certain families you never forget, and Myles’ parents is one of those families,” she said.
Including other fundraisers, the family says it has raised nearly $15,000 for the hospital’s foundation.
“As a parent, you want to do acts of love for your children as they grow up. Just because your child isn’t here, that need is still there,” said Bishara.
Montreal Children’s Hospital Foundation president Renée Vezina said the parents contributions are vital to the functioning of the hospital, because government funding isn’t enough.
“We’re very, very grateful,” she said. “Money is needed to find cures and money is needed to help our kids survive.”
The parents feel the Million Reasons Run fundraiser has also helped break the stigma, giving people an opportunity to talk to them about something that can be hard to bring up.
“I think this kind of opens up a platform for friends and family, to be able to celebrate him and do something and think of him while they’re doing it,” said Bishara.
Phaneuf has also gotten involved in the Myra Kids Foundation’s WAM program.
“It helps all fathers dealing with losses. It really helps guide us and give us an outlet, when dealing with this tragic loss,” he said.
They’ve made sure their other two children know all about Myles. They plan to continue channeling their grief toward helping others, sparking change in Myles’ name.
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