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 ran nearly 120 miles together last month as part of the “Million Reasons Run.” With every foot that hits the pavement, their goal is to honor their son Myles.
“I think it’s about providing a legacy for Myles because he can’t provide his own legacy,” Bishara said.
When she was twenty weeks pregnant, an ultrasound showed that they were having a boy and that something was wrong.
The fetal cardiologist Dr. Tiscal Cavalle of the Montreal Children’s Hospital made the diagnosis.
“It was something like a double outlet right ventricle with an interrupted aortic arch. It is one of the most complex deformities we can see,” she told Global News. “The prognosis was only guarded due to the complexity of the disease.”
She said about 1 in 100 babies are born with heart malformations, but this particular occurrence is much rarer.
Staff at the Montreal Children’s Hospital told them Myles would need open-heart surgery within days of birth.
Myles arrived on June 13, 2022. They both had to hold him before he was rushed to the neonatal intensive care unit.
“He was perfect. He weighed six pounds, three ounces,” Bishara said.
Myles underwent a 16-hour open-heart surgery, during which an entire medical team assembled to repair the small vital organ.
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“There were so many things that needed to be resolved. It was very, very complicated,” Cavalle said.
They called him Myles, because the name means soldier. The little warrior fought the good fight with his parents by his side.
“They behaved extremely well in the face of adversity and uncertainty,” Cavelle said. “They are a very fantastic, inspiring family.”
‘You do everything for your children. Even as things got gloomier, we didn’t want to leave any stone unturned. We wanted to make sure we gave him every opportunity,” Phaneuf said.
After nine terrible days on a ventilator, his heart still couldn’t beat on its own. Doctors gave the parents the dreaded news.
“I never gave him up until they told me to,” Bishara said.
Bishara and Phaneuf have dedicated themselves to forging a legacy of generosity in Myles’ memory.
In the run-up to what would have been his second birthday this year, they signed up for the A million reasons to run, raised over $8,500 for the Montreal Children’s Hospital. It’s almost double their original goal. The fundraiser runs until the end of May.
“It’s an extremely proud moment for us because he is creating change and his life is meaningful,” said Phaneuf.
“It was very emotional to see the outpouring of love we received. I never thought I would raise so much,” Bishara said.
Dr. Cavalle says the money they raise will help every aspect of the complex care needed to help children like Myles.
“I am extremely proud of this family. I really carry them in my heart. There are certain families you never forget, and Myles’ parents are one of those families,” she said.
Including other fundraising efforts, 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 is not there, that need is still there,” Bishara said.
Renée Vezina, president of the Montreal Children’s Hospital Foundation, said parents’ contributions are essential to the hospital’s functioning because public funding is not enough.
“We are very grateful,” she said. “It takes money to find medicine and it takes money to help our children survive.”
The parents believe the Million Reasons Run fundraiser also helped break the stigma, giving people the opportunity to talk to them about something that can be difficult to bring up.
“I think this opens up a platform for friends and family to be able to celebrate him, do something and think of him while they do it.,” Bishara said.
Phaneuf has also become involved in the The WAM program of Myra Kids Foundation.
“It helps all fathers dealing with losses. It really helps give us direction and an outlet as we deal with this tragic loss,” he said.
They made sure their other two children knew everything about Myles. They plan to continue channeling their grief toward helping others, bringing about change in Myles’ name.
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