Three weeks into her 7-year-old son re-learning how to walk, Becs Hoskins is impressed with the supports and therapies at the Sunny Hill Acute Rehab.
“It’s crazy how rich of an environment this is,” the Oak Bay mom said in a phone interview from Vancouver.
Simon, who turns 8 on May 19, lives with mucopolysaccharidosis (MPS) Type IV commonly called Morquio syndrome. MPS is a rare progressive genetic disease 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. Type IV, or Morquio, mainly affects the skeleton.
In March, Simon had several surgeries at BC Children’s Hospital. In general terms, doctors rebuilt and restructured much of the youngster’s hip and pelvis area; adjusted existing plates in his knees and placed stabilizing screws in his ankles.
RELATED: A tale of 2 Simons – Oak Bay family embarks on rare disorder awareness campaign
He returned home for a month or so, significantly limited in mobility, then returned for rehabilitation.
The plethora of therapies available, including recreation therapy at Science World, add a silver lining the six to eight weeks of relearning how to use his body, Becs said.
“It’s a long rehab, it’s a year of getting his hips going again and walking again.”
When he does return, he’ll be using a wheelchair and walker to get around.
The goal is to return ahead of summer, maybe get in a little school before it lets out for the year.
“We would like him to have some school before the summer, some return to normalcy,” Becs said.
Last year, Simon and his family – twin sister Isabel, older brother Spencer and parents Becs and Trevor – pledged to raise $100,000 for MPS research while elevating awareness. They mark the anniversary of that launch this month, with International MPS Awareness Day on May 15 ahead of the twins’ birthday May 19.
Long before reaching the one-year mark, they knew they’d reached the cash goal well ahead of the final gala fundraiser in March.
RELATED: Oak Bay family expects to hit $100K goal for rare disorder by deadline
“So we challenged the room to raise another $100,000 that night and they did,” Becs said.
In fact the campaign tripled its goal, bringing in more than $300,000.
As for the other element of raising awareness, Becs sees so many positive signs for both MPS and equality in general.
Social media channels are humming along, with folks interacting and responding.
At Willows Elementary where all three siblings attend school, the parent advisory council picked up the ball in a self-propelled initiative to shift the school to be more open about talking about disabilities and inclusion.
“I didn’t have to go and pitch it to them,” she said. “I’ve been able to step back and provide some advice and they’ve run with it.”
Which is great for Becs, who admits, “I have no extra bandwidth right now.”
Willows PAC turned its blossom tree spring festival on May 24 into a Cure MPS fundraiser. The parents are also organizing sales of blue MPS awareness T-shirts for folks to wear.
“On the surface it’s about Simon,” she said. “It’s about creating a more inclusive community … raising people’s awareness about all the things life throws at people.”
The Hoskins, and now their supporters, encourage folks to wear blue on May 15 to mark MPS Awareness Day.
Visit curemps.ca to learn more.
