Quebec family raising awareness and money for sick child with rare illness

Click to play video: 'Montreal family is raising awareness and money for sick child with rare illness' Montreal family is raising awareness and money for sick child with rare illness
WATCH: A Montreal family is trying to raise awareness and funds for a rare disease that afflicts their son. Liam Reason struggles to walk, talk and faces a challenging diagnosis. As Global’s Amanda Jelowicki reports, his family wants to raise money for the Montreal Children's Hospital so others suffering may have a better chance at life – Dec 10, 2020

A Quebec family is struggling to raise funds and awareness for their son who has been diagnosed with a rare condition.

There’s no doubt Liam Reason is fighting a health battle no child should. The seven-year-old was diagnosed with autism three years ago after his family had noticed he had delayed speech and motor abilities.

And then last year, he suffered a devastating seizure. He spent a month at the Montreal Children’s Hospital, and underwent extensive testing.

“It was only when he had his first seizure and then he was in the hospital, that is when it kind of went downhill,” said his father Kevin James Reason.

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Doctors diagnosed him with Polg syndrome, a rare mutation of mitochondrial disease. The genetic condition attacks his organs, and causes a decline in cognitive abilities.

“It’s been very tough,” said Reason. “At first, I was very angry at myself. Laurie (my wife) was in a depression. And then I turned the anger into being an advocate for this.”

One of the geneticist’s who has worked with Liam said he faces a difficult diagnosis, and a big goal is trying to stop him from having more seizures, which can be dangerous.

“He doesn’t have enough energy. All his cells are suffering,” said Dr. Daniela Buhas, a geneticist at the Montreal Children’s Hospital. “We are trying to help him … but it’s not something that we are able to cure.”

Read more: Jumping for autism: Montreal online awareness challenge launched

Since the seizure, Liam’s cognitive abilities have declined.

“Things are happening in his body that don’t allow him to make the progress that I want him to achieve,” said behavioural therapist Viki McArthur, who sees Liam four times a week. “It’s very frustrating and he won’t be able to do these things until we find a cure.”

Liam’s family want to raise awareness about his disease. They formed a foundation in his name, and are selling items like tote bags with Liam’s artwork, and sweatshirts, online.

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They hope to raise at least $500,000 to help establish a research centre at the Montreal Children’s hospital.

“The ultimate goal is to get a research centre and I will never stop until it happens,” said Reason.

Kevin knows the long term prospects for his son don’t look good, but he isn’t giving up on Liam.

“I keep fighting and that keeps me going and every morning when I wake up and Liam is there, it’s a great day for our family,” he said.

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