8-year-old in Montreal battling rare debilitating disease with assist from Habs Cup winner

At eight years old, Liam Reason has spent half his life with a debilitating disease.

Liam has Mitochondrial Disorder in his central nervous system, meaning he suffers from seizures and developmental delays.

As the young man goes in and out of the Montreal Children's Hospital - his dad, Kevin James Reason, helps find a cure.

The disease is rare, so when Reason couldn't find enough information, he decided to fix that.

"It became clear as day that research and awareness are needed, so I took the role on myself and said I have to spread awareness," he said. "[I] spoke to doctors and said, 'we gotta bring in treatments and let's get this going.'"

He started The Liam Foundation and began raising money to fund research.

Dr. Kenneth Myers at the Children's agrees.

"It" s been fantastic that Liam's family has been raising money to support trials for what he has," said Myers.

The project means a lot of hard work, and Montreal Canadiens Stanley Cup champion Chris "Knuckles" Nilan offered to help.

Nilan is the Liam Foundation ambassador and is a friend to the Reason family.

"Since this medication has come on, Liam has been more vocal," said Nilan. "He says 'Knucks' - my nickname - and he is actually more mobile before he was before the medication."

With Health Canada approval, The Liam Foundation is currently funding a trial involving a type of medication.

Myers is optimistic.

"We right now only have preliminary data, but the little bit we have is encouraging," he said.

Nine other children living with the disease will be a part of the next phase of trials.

Meanwhile, Liam has been visiting the "Little Bright Lights Behaviour Clinic" in Rosemere, and they've seen a change over the past few months. Registered behavioural technician Margaret Fletcher has been working with Liam.

"It's beautiful when your kids start to communicate when they couldn't and start to find their voice," she said.

"Liam is much more alert, trying to speak more, communicate more, laughing more, and his balance is getting a little bit better," said Reason.

A national support network, Mitochondria Canada, has joined forces with The Liam Foundation to create a patient contact registry.

"When I see him laugh and respond, it really touches my heart, this little man," said Nilan. "I'd love nothing more than to see him get better."