As Simon Hoskins rounds out a year serving as the face of mucopolysaccharidosis (MPS) he prepares for a host of surgeries that will see him in a cast.
Simon, who turns 8 on May 19, lives with MPS Type IV commonly called Morquio syndrome. Instead of dwelling on the negatives – and there are plenty that they share in as positive a way as possible – his Oak Bay family focuses on how to raise awareness and funds to research the rare, progressive, genetic disorder.
“We have this intention of hopefully creating awareness and a supportive community around our family and Simon and it’s been amazing,” said mom Becs Hoskins.
Last year, Simon and his siblings, twin sister Isabel and older brother Spencer, set out to educate peers and staff at Willows elementary, where that community has excelled, their mom said.
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The family also pledged to raise $100,000 for research.
“It’s more of a joyful take on a really difficult situation and that seems to be resonating with people. And doors are opening. … Sharing our story has been wildly helpful,” their mom said.
The Cure MPS website, blog and social media are humming with interaction that inherently shares information and spreads awareness.
Plus Simon loves making content, Becs said.
Nowhere is that spread of information more evident than the biggest donation yet in the yearlong campaign, $25,009 raised with a holiday hockey tournament and matched by an anonymous donor.
Each year on Boxing Day (except 2020 and 2021) the Oak Bay Xmas Cup fills the rec centre on Bee Street with family fun and fundraising for a community. Usually the event raises cash for someone or something connected to the tournament.
This year someone directed organizer Sean Tackaberry to the Cure MPS campaign.
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“I love that they’ve set out a goal to raise money by a certain date and being able to chip in toward that is key,” Tackaberry said. “Sixty-four people play (the tournament) and half them know the family and I didn’t know that going into it.”
The event has raised more than $154,000 over the years with the last two being the biggest fundraisers – each amassing $25,000 – with the event whittled down to two games and a family skate.
When faced with cutting the cheque, Tackaberry added nine bucks, so the total ended in Simon’s favourite number.
An anonymous donor doubled the donation, and that put the Cure MPS campaign well on track to hit its $100,000 target by Simon’s birthday.
Funds raised will go to the Morquio Fund at the Isaac Foundation for research.
MPS impacts every part of the body. Caused by missing or malfunctioning enzymes that break down molecules called glycosaminoglycans, over time, the glycosaminoglycans collect in the cells resulting in permanent, progressive cellular damage.
While not a cure, Simon spends a full day each week receiving a transfusion of a synthetic enzyme.
Physical challenges Simon faces include dwarfism, skeletal dysplasia and joint pain. To manage, he’ll use a push bike or scooter to get around or in some situations a wheelchair. That last one will be the main mode of movement this spring as the outgoing and energetic kid expects to spend spring break in a full body cast.
Simon has a March 13 surgery scheduled at his regular stomping grounds, BC Children’s Hospital. In a nutshell, doctors will rebuild and restructure much of the youngster’s thigh, hip and pelvis area; adjust existing plates and add more in his knees (a process that aims to help his lower legs grow aligned better for less pain and more mobility); and place stabilizing screws in his ankles.
The family expects that after a week in hospital, they’ll head home where Simon faces four or five weeks in a cast from the chest down.
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The’ll head back to Children’s for six to eight weeks of rehabilitation with hopes to have Simon up and around again by June.
Learn more about the family’s challenges with the blog, find a link to donate to the cause or learn more about MPS in general online at curemps.ca.
An anonymous benefactor is doubling donations until the family hits its $100,000 goal.
