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 B次元官网网址� and there are plenty that they share in as positive a way as possible B次元官网网址� his Oak Bay family focuses on how to raise awareness and funds to research the rare, progressive, genetic disorder.

B次元官网网址淲e have this intention of hopefully creating awareness and a supportive community around our family and Simon and itB次元官网网址檚 been amazing,B次元官网网址� 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.

B次元官网网址淚tB次元官网网址檚 more of a joyful take on a really difficult situation and that seems to be resonating with people. And doors are opening. B次元官网网址� Sharing our story has been wildly helpful,B次元官网网址� 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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B次元官网网址淚 love that theyB次元官网网址檝e set out a goal to raise money by a certain date and being able to chip in toward that is key,B次元官网网址� Tackaberry said. B次元官网网址淪ixty-four people play (the tournament) and half them know the family and I didnB次元官网网址檛 know that going into it.B次元官网网址�

The event has raised more than $154,000 over the years with the last two being the biggest fundraisers B次元官网网址� each amassing $25,000 B次元官网网址� 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 SimonB次元官网网址檚 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 SimonB次元官网网址檚 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, heB次元官网网址檒l 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 ChildrenB次元官网网址檚 Hospital. In a nutshell, doctors will rebuild and restructure much of the youngsterB次元官网网址檚 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, theyB次元官网网址檒l head home where Simon faces four or five weeks in a cast from the chest down.

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TheB次元官网网址檒l head back to ChildrenB次元官网网址檚 for six to eight weeks of rehabilitation with hopes to have Simon up and around again by June.

Learn more about the familyB次元官网网址檚 challenges with the blog, find a link to donate to the cause or learn more about MPS in general online at .

An anonymous benefactor is doubling donations until the family hits its $100,000 goal.