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Montreal family turns to crowdfunding campaign to help toddler with rare disease

posted Jan 5, 2015, 9:51 PM by J Shaw   [ updated Jan 6, 2015, 6:38 PM by David Khorram ]
MONTREAL – Like most three-year-olds, Éloïse Baxter loves cartoons and lights up at the different sounds of music.

What makes the toddler unique, though, is a genetic mutation known as Coffin-Siris Syndrome.

Her father Graham Baxter calls it “the lottery you don’t want to win.”
It’s a disease so rare that Éloïse is the only person in Quebec who has been diagnosed with it.

“The first 16-months living in the hospital, in the intensive care unit and having these close brushes with death, not fun,” he told Global News.

“Preparing for a funeral, not fun.”

Miraculously,  Éloïse made it past her first birthday.

Now, life at home is a constant roller coaster ride.

“You live life differently, it’s very regimented, it’s very methodical,” explained her father.

“Every minute, every hour is timed and there’s probably not a minute that goes by where our mind isn’t on our daughter.” 

The disease restricts her ability to walk, talk and eat.

She’s fed through a tube continuously for 16 hours a day.

In addition to Coffin-Siris Syndrome, Éloïse also suffers from severe Scoliosis, an abnormal curvature of the spine which prevents the development of her lungs.

She depends on an oxygen tank to help her breathe.

As the bills continue to pile up, the family is hoping a crowdfunding campaign will raise money for an adapted van to help move Éloïse around more easily.

The family’s goal is to raise $25,000.

Even though Éloïse’s future is unclear, her family remains optimistic.

“When you’re faced with such a massive life event, a rupture of sorts, the only way to function is on the day, on the week and you try not to go too ahead, you really celebrate every moment,” her father, Graham, told Global News.

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