The Million Reasons Run: Elliot’s story
Throughout the month of May, Elliot and her family have been running to raise money for the Montreal Children's Hospital, where Elliot has been taken care of all her life
Elliot was born with a rare genetic condition called Myhre Syndrome, which causes scar tissue to build up in the joints, skin and organs. Now 17, she has been a patient at Montreal Children’s Hospital her entire life. Elliot is the only known case in Quebec, with only 200 known cases worldwide. She and her family are participating in the Million Reasons Run as Team Elliot, and have already surpassed their fundraising goal of $5,000.
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Elliot’s mother, Maia, says that doctors knew something was wrong while her daughter was still in the womb. Born prematurely, Elliot had a heart defect, a misshapen head and a severe cleft palate, and that was only the beginning. Today, she has had 29 surgeries, and the staff at Montreal Children’s Hospital call her a “frequent flyer” because she spends so much time there. It took 10 years for doctors to figure out what was wrong with Elliot, and the family finally got answers when, on Christmas Eve, a resident learned she had Myhre Syndrome. At first, Elliot didn’t understand what was happening to her.
“She was incapacitated, in pain and exhausted,” explains her mother. “It’s very hard to see your child like that. I would talk to her about her feelings; are you crying because of the pain, or because you’re tired of the pain? Now, she is a teen and understands, which is very empowering for her.”
With everything Elliot has been through, her family can’t say enough good things about the care she’s received at Montreal Children’s Hospital. The kindness, generosity and flexibility of the staff always made Elliot and her family feel safe and well cared for, and they always did everything in their power to make sure surgery times worked for the family.
Myhre Syndrome is a progressive disease, so doctors don’t know what the future holds for Elliot. This makes fundraising to support research even more critical if there is any chance at helping kids like Elliot. With only a few days left of the Million Reasons Run Challenge, Team Elliot has raised over $5,500 and run more than 940 kilometres. If you would like to support Elliot and her family, head over to their fundraising page to donate.
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