Back To All Blogs

For the Love of Their Sister 

By: Jason Michaud

We have all heard the term, “For the love of the game”, where a sport is played purely for the joy it brings to one’s life. This past February in Strathcona County, Alberta, Canada, two brothers Ryan (13) and Nikolas (11) Michaud used their love of the game of ice hockey for the love of their sister Jillian (9) and the joy she brings to their life.     

Nikolas, a goaltender with the Strathcona Warriors U13 hockey team, and Ryan wanted to make a difference in the life of their sister and the lives of others living with Smith-Magenis Syndrome (SMS). They created a fundraiser using the game of hockey to raise money for PRISMS (Parents and Researchers Interested In Smith-Magenis Syndrome) and awareness about SMS. Titled “Saves for SMS” the brothers came up with the idea that for the month of February they would seek pledges and donations for every save that Nikolas made.

Ryan, the organizer and the planner of the event, was the official save counter in the four games that Nikolas played. What started as a little seed idea in hopes of besting their fundraising total of $375 from a bake sale they did in 2019 for PRISMS, turned into a smashing success. They began their campaign with a promotional video, created by Ryan, outlining their idea for the month. Within minutes of their video being posted to social media, donations began to flood in.

As the views of the video grew, so did the momentum of their campaign. Media outlets began to contact them with interest in their story and awareness about Smith-Magenis Syndrome grew considerably in their community. In addition to Ryan emailing updates about Nikolas’ games and information and facts about Smith-Magenis Syndrome, the Michaud family was featured on Global News Edmonton, CTV News Edmonton, in the Sherwood Park Newspaper as well as a live radio interview on 630 CHED.

It was a story that captivated the hearts of the hockey community, the special needs community, and the entire community at large. In addition to fundraising campaigns from other hockey teams and the school where their dad works, the boy’s campaign received donations from 219 very generous individual donors. The total at the end of the campaign far surpassed their initial goal! The boys raised an astonishing $25,000CAD to be donated to PRISMS.

One of the highlights of the month-long campaign occurred on Monday, February 28th. Coinciding with Rare Disease Day. Nikolas’s team played the ‘Saves for SMS Celebration Game’ outdoors at Saiker’s Acres. Saiker’s Acres is a well-known venue in the local community as the home of the World’s Longest Hockey game where millions of dollars have been raised for cancer research through the efforts of its founder Dr. Brent Saik. The charitable efforts of Dr. Saik were one of the inspirations behind the boys wanting to give back to a cause near and dear to their hearts. It was a very special night with over 100 people in attendance. Ryan MC’d the evening, Jillian dropped the puck in the opening faceoff, and both teams and fans were accessorized with the color blue which is the color for PRISMS. It was a fantastic way to celebrate Jillian, the ‘Saves for SMS’ campaign, and a way for Ryan and Nikolas to say THANK YOU to all those that supported them and their sister during the month.

Having a sibling with Smith-Magenis Syndrome comes with many challenges. Ryan and Nikolas sacrifice things daily due to their sister’s complex needs and many of their experiences are not ‘typical’ but rarely will you hear them complain. They find joy in the little things with their sister and truly love her unconditionally. They embrace her silliness and protect her to no end. They are two of her biggest supporters in all she does and this is witnessed by their hope for the funds they raised. They hope that all money raised will go to advancements in Smith-Magenis Syndrome research to improve the life of Jillian and all children living with SMS. ‘Saves for SMS ‘ was truly inspiring as we watched two brothers working as a team on a dream for their sibling. You cannot ask for greater love than the one Ryan and Nikolas Michaud share for their sister Jillian.

Photos courtesy of Cormack Photography Carmen Parson

Are you interested in creating a fundraiser for PRISMS? We have made it easy for you! Just click here to get started!