Becs Hoskins has a happy image of her eight-year-old son 乌鸦传媒� tucked into a tux paired with old-school, converse-style hightops 乌鸦传媒� 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乌鸦传媒檚 Hospital.

Simon lives with mucopolysaccharidosis (MPS) Type IV commonly called Morquio syndrome. Instead of dwelling on the negatives, the family 乌鸦传媒� including twin sister Isabel, older brother Spencer and dad Trevor 乌鸦传媒� 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乌鸦传媒檇 be great in the Small but Mighty Campaign ads.

Morquio symptoms include skeletal abnormalities, including short stature, making Simon truly 乌鸦传媒渟mall but mighty乌鸦传媒�, 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乌鸦传媒檚 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乌鸦传媒檚 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乌鸦传媒檚 Hospital Research Institute and Congdon Family Hospital Chair in Research at BC Children乌鸦传媒檚 Hospital.

乌鸦传媒淣ow it乌鸦传媒檚 launched and that乌鸦传媒檚 thanks to the kids, the community and the families that have rallied around it and fundraised for it,乌鸦传媒� she told the Oak Bay News.

She乌鸦传媒檚 impressed with the children lending their character and knowledge to the campaign 乌鸦传媒� describing Simon in particular as vivacious, engaging and interested in people.

乌鸦传媒淚t乌鸦传媒檚 not a given, sometimes when we work with children,乌鸦传媒� Doan noted. 乌鸦传媒淢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 乌鸦传媒� that is special.乌鸦传媒�

It helps that Simon, particularly for a kid his age, has the perspective to understand the program's value.

乌鸦传媒淐hildren are 15 to 20 per cent of our population depending on where you are but they乌鸦传媒檙e 100 per cent of our future,乌鸦传媒� 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.

乌鸦传媒淚n other conditions, the way we treat them is extrapolating from adult treatments 乌鸦传媒� which can be harmful in children,乌鸦传媒� the doctor said. 

乌鸦传媒淐linical trials are very rare and limited in the pediatric population and we thought that乌鸦传媒檚 not right.乌鸦传媒�

The biggest difficulty involved is the expense. Typically, the pharmaceutical industry doesn乌鸦传媒檛 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.

乌鸦传媒淭hat is expensive,乌鸦传媒� Doan said.

She pitched a dream and BC Children乌鸦传媒檚 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乌鸦传媒檚 gala where Simon 乌鸦传媒渨as really the star of the show,乌鸦传媒� Doan said.

乌鸦传媒淚 was so impressed that he took it on. He really, truly understood the idea behind the clinical trial super hub.乌鸦传媒�

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.

乌鸦传媒淚t乌鸦传媒檚 about finding new treatments and cures for kids diseases so that乌鸦传媒檚 where we put our effort,乌鸦传媒� Becs said. 乌鸦传媒淚t乌鸦传媒檚 building on his home away from home at the hospital.乌鸦传媒�

It helps that the campaign blends his love of acting and being in front of the camera 乌鸦传媒� 乌鸦传媒渋n line with who Simon is and how Simon wants to thrive in the world,乌鸦传媒� his mom added.

The clinical trial super hub already has a foundational expert team in place 乌鸦传媒� 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乌鸦传媒檚 campaign was $255 shy of the $10,000 target 乌鸦传媒� but he乌鸦传媒檚 become accustomed to smashing goals.

Find the campaign online at .