A pair of Ardrossan, Alta., brothers is rallying around their younger sister battling a rare genetic disease.
Ryan, Nikolas and Jillian Michaud are incredibly close.
“She’s very important to us, She loves to play. She’s very goofy,” said 11-year-old Nikolas about Jillian.
“She means a lot, and one of my favourite things about her is her hugs,” 13-year-old Ryan added.
Nine-year-old Jillian has a rare genetic disorder called Smith-Magenis syndrome (SMS) that affects many parts of the body. She was diagnosed at around three years old.
“She has a deletion of chromosome 17,” mom Charlene Michaud said. “With that, she has a lot of all-encompassing characteristics that affect her life.”
The two that are a big struggle are sleep and behaviour.
“Every day starts anywhere between 4 a.m. to 5 a.m.,” dad Jason Michaud explained.
“Very restless sleep-wake cycle, so she’s up frequently during the night and you have to monitor getting her back to sleep… A lot of self-injurious behaviour where she’ll bang her head on the floor or hit herself or they bite. They pull their fingernails off. Then on top of that, there’s the cognitive delays and the physical challenges.”
Inspired by the World’s Longest Hockey Game, Ryan and Nikolas started brainstorming how they could help and came up with an idea.
“Using Nik’s skills as a goalie and my skills as like an organizer and planner to raise money,” Ryan explained.
They dubbed it “Saves for SMS.”
Essentially, every save Nikolas makes on the ice is money raised for an organization called PRISMS or Parents and Researchers Interested in SMS.
It supports families through programs dedicated to education, awareness and research.
“That’s been our lifeline on this journey,” Jason said. “That’s our Smith-Magenis family.”
As far as the Michauds understand, there are about 13 diagnosed cases in Alberta.
The community has rallied around Jillian, especially Nikolas’ hockey team.
“The team is great with her,” he said.
Nikolas has four games this month, and in the first two games, he made 45 stops raising about $6,000.
“To make life better for SMS and Jillian,” Nikolas added.
The family is grateful for all the support.
“We are blown away by people’s generosity,” Charlene said.
Not to mention proud of their kids.
“Our heart is overflowing because, for these two little boys who are quite young to take on a mission like this to support their sister, we couldn’t be more proud as parents.”
For more information and ways to donate, contact the family at savesforsms@gmail.com.
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