Saves for SMS: Brothers raise more than $9K for research of younger sister's genetic condition

Research fundraiser for genetic disease Two Ardrossan brothers have teamed up to raise money to research the genetic disease their little sister lives with.

Two Ardrossan, Alta., brothers are teaming up to raise money for research of a rare genetic condition their little sister lives with.

Jillian Michaud has Smith-Magenis Syndrome (SMS). The nine-year-old is missing part of a chromosome – leading to behavioural issues, communication problems, and trouble sleeping.

Her older brothers Nikolas and Ryan decided to raise awareness and money for research of SMS during Nikolas's February hockey games.

Nikolas, a goalie on his hockey team, will make "Saves for SMS" – with older brother Ryan counting each save his brother makes during his four games this month.

The boys have been asking for people to make donations – either a pledge of 50 cents per save, or a lump sum donation – with all the money going to PRISMS.

"That's what we're basically doing, to raise money for PRISMS and to teach them more about SMS," said Ryan.

The non-profit Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS) was founded in 1993 by a group wanting to increase education, awareness and research opportunities for those affected by SMS.

"Maybe like, get a pill that could help her, or a cure," said Nikolas. "Make life easier for Jillian and other SMS-ers."

So far the brothers have raised more than $9,000 for PRISMS.

"I didn't expect it would go this far, I only thought we'd be at like $1,000," said Nikolas. "I didn't know it'd do this well."

"We're getting emails from other families that saw the social media post or whatnot – and just saying, 'Hey, I have an SMS child,' we found out there's two in Edmonton that we didn't know before," said Jason Michaud, Jillian's dad.

SMS complicates life for the Michaud's but their shared love far outweighs Jillian's condition.

"That's the thing with this little girl," said Charlene Michaud, Jillian's mom. "She has a way of leaving an imprint on anybody's heart that kinda comes her way."

"Jillian's hugs are like, probably the best hug you would receive. Like her hugs make you feel really good," said Nikolas.

So far Nikolas has stopped 62 shots in three games with one more game left on Friday.

Donations to "Saves for SMS" can be made by emailing [e-mail].

With files from CTV News Edmonton's Carlyle Fiset