When Nikolas and Ryan Michaud think of their little sister Jillian, they think of the joy she brings to their life. Nikolas says that Jillian’s hugs are unmatched, maybe the best in the world. But when they think of Jillian, they also think about raising awareness. You see, 9-year-old Jillian has Smith-Magenis syndrome (SMS), a rare and complex developmental disorder. According to CTV News Edmonton, the brothers decided to combine their love for hockey – and for their sister – to raise both funds and awareness for SMS. Thus far, Nikolas and Ryan have raised over $9K through their “Saves for SMS” — with the potential to raise even more this week!
“Saves for SMS”
“Saves for SMS” was thought up by Nikolas, who plays goaltender for his hockey team. Each game, Ryan counts how many saves Nikolas makes. Over the month of February, Nikolas and Ryan asked for people to either donate a lump sum or just $0.50 per save. The money that they are collecting is being donated to Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS). Altogether, this nonprofit organization offers support and resources to families, helps spur research, and aims to increase awareness and understanding around Smith-Magenis syndrome.
At first, Nikolas and Ryan thought that they might be able to raise $1K for PRISMS. However, their efforts – and Nikolas’ 62 saves within 3 games – have far exceeded expectations. The pair has raised over $9K for the organization. Nikolas’ last game will take place on Friday, February 18.
If you would like to help pledge $0.50 per save, or help donate to “Saves for SMS,” you may do so by emailing [email protected].
About Smith-Magenis Syndrome (SMS)
Smith-Magenis syndrome (SMS) is complex developmental disorder which affects multiple organ systems throughout the body. In most cases, SMS results from a deletion of genetic material from a specific region of chromosome 17 – and in particular, the RAI1 gene. However, it is possible for an RAI1 mutation – without larger chromosomal deletion – to cause SMS. An estimated 1 in every 15,000-25,000 people is born with SMS. This condition is highly variable, so symptoms and characteristics may differ from patient to patient. However, some potential symptoms or characteristics include:
- A broad, square-shaped face with deep-set eyes and a prominent jaw
- Dental abnormalities
- Sleep disruptions
- Self-hugging
- Delayed speech and language skills
- Chronic constipation
- Mild-to-moderate intellectual delays
- Affectionate, engaging personalities
- Behavioral problems, including aggression, impulsivity, or anxiety
- Self-injurious behavior
- Reduced sensitivity to pain and temperature
- Scoliosis (abnormal spinal curvature)
- A short stature
- Hoarseness
- Ear abnormalities and associated hearing loss
- Nearsightedness
