Becs Hoskins has a happy image of her eight-year-old son 鈥� tucked into a tux paired with old-school, converse-style hightops 鈥� dancing the night away with a grin.
Simon, 8, stayed up til the wee hours of the morning at the Crystal Ball fundraiser in Vancouver, putting on his usual charm as he served as one of many young faces of a campaign to create a pediatric clinical trial super hub at BC Children鈥檚 Hospital.
Simon lives with mucopolysaccharidosis (MPS) Type IV commonly called Morquio syndrome. Instead of dwelling on the negatives, the family 鈥� including twin sister Isabel, older brother Spencer and dad Trevor 鈥� focuses on how to raise awareness and funds to research the rare, progressive, genetic disorder.
In the first year, their Cure MPS campaign raised far beyond the $100,000 goal and spurred myriad conversations in Greater Victoria and well beyond.
After he had major surgery earlier this year, Simon spent significant time in rehab at Sunny Hill Health Centre where his music therapist suggested he鈥檇 be great in the Small but Mighty Campaign ads.
Morquio symptoms include skeletal abnormalities, including short stature, making Simon truly 鈥渟mall but mighty鈥�, his mom noted.
He and his twin sister Isabel did a photo shoot for the campaign where they got to know Simon and learned more about his genetic condition.
He already undergoes weekly enzyme transfusions to slow progression, but it is not a cure.
Clinical trials are key to Simon鈥檚 future.
They invited him into the Crystal Ball Designation Video, an inviting piece shown during the event to inspire donors to support the development of the BC Children鈥檚 Hospital Clinical Trials Super Hub.
The idea felt like a dream a few years ago, said Dr. Quyhn Doan, senior executive director of BC Children鈥檚 Hospital Research Institute and Congdon Family Hospital Chair in Research at BC Children鈥檚 Hospital.
鈥淣ow it鈥檚 launched and that鈥檚 thanks to the kids, the community and the families that have rallied around it and fundraised for it,鈥� she told the Oak Bay News.
She鈥檚 impressed with the children lending their character and knowledge to the campaign 鈥� describing Simon in particular as vivacious, engaging and interested in people.
鈥淚t鈥檚 not a given, sometimes when we work with children,鈥� Doan noted. 鈥淢ost kids are usually a little less out there and for him to be interested in other people, and asking questions of adults, and just engaging 鈥� that is special.鈥�
It helps that Simon, particularly for a kid his age, has the perspective to understand the program's value.
鈥淐hildren are 15 to 20 per cent of our population depending on where you are but they鈥檙e 100 per cent of our future,鈥� Doan said.
Clinical trials have been integrated into the kids' oncology ward forever; they're how doctors learn whether treatments work, how safe they are and how best to provide them.
鈥淚n other conditions, the way we treat them is extrapolating from adult treatments 鈥� which can be harmful in children,鈥� the doctor said.
鈥淐linical trials are very rare and limited in the pediatric population and we thought that鈥檚 not right.鈥�
The biggest difficulty involved is the expense. Typically, the pharmaceutical industry doesn鈥檛 see a lot of profit so building infrastructure, expertise and capacity to host a hub of clinical trials would make it a more viable option.
鈥淭hat is expensive,鈥� Doan said.
She pitched a dream and BC Children鈥檚 Hospital was responsive. The community there rallied and kicked off the campaign with the Crystal Ball in 2023, and continued that pitch with this December鈥檚 gala where Simon 鈥渨as really the star of the show,鈥� Doan said.
鈥淚 was so impressed that he took it on. He really, truly understood the idea behind the clinical trial super hub.鈥�
Crystal Ball 2024 raised more than $4M in support of the super hub, in part thanks to Simon who also spoke at the event. He built on that momentum for Giving Tuesday days later, dedicating the ongoing Cure MPS fundraising to the cause.
鈥淚t鈥檚 about finding new treatments and cures for kids diseases so that鈥檚 where we put our effort,鈥� Becs said. 鈥淚t鈥檚 building on his home away from home at the hospital.鈥�
It helps that the campaign blends his love of acting and being in front of the camera 鈥� 鈥渋n line with who Simon is and how Simon wants to thrive in the world,鈥� his mom added.
The clinical trial super hub already has a foundational expert team in place 鈥� about four people on the quality and regulatory, two clinical trial nurses, a couple of pharmacy staff and a lead on a coordinator in the laboratory for dedicated research work. They hope to add a couple of dedicated technicians.
By Friday, Dec. 20, Simon鈥檚 campaign was $255 shy of the $10,000 target 鈥� but he鈥檚 become accustomed to smashing goals.
Find the campaign online at .
