Introduction

Eight-year-old Simon Hoskins, dressed in a dapper tuxedo and vibrant converse high-tops, lit up the Crystal Ball fundraiser event in Vancouver, embodying the spirit of hope and resilience as he danced the night away. Simon is not just a charming young boy; he is a symbol of determination in the fight against mucopolysaccharidosis (MPS) Type IV, also known as Morquio syndrome—a rare genetic disorder that presents several challenges, including skeletal abnormalities and short stature.

Family's Commitment to Awareness

Instead of succumbing to the difficulties posed by Simon's condition, his family—including his twin sister Isabel, older brother Spencer, and dad Trevor—decided to focus on raising awareness and funds for crucial research into MPS. Their Cure MPS campaign exceeded expectations in its first year, raising over $100,000 and sparking critical conversations throughout Greater Victoria and beyond.

A Pivotal Year for Simon

This year has been pivotal for Simon. Following major surgery, he spent significant recovery time at Sunny Hill Health Centre, where a music therapist recognized his potential and suggested he feature in the Small but Mighty Campaign, aimed at promoting pediatric clinical trials at BC Children’s Hospital. Simon perfectly represents the campaign, showcasing resilience despite his physical limitations.

Importance of Clinical Trials

Having already undergone weekly enzyme transfusions to help slow the progression of Morquio syndrome, Simon’s future heavily relies on clinical trials that could lead to new treatments. It was during the Crystal Ball event that Simon was invited to participate in a video presentation aimed at encouraging donations to establish a Clinical Trials Super Hub at BC Children’s Hospital.

Community Support

Dr. Quyhn Doan, senior executive director of BC Children's Hospital Research Institute, emphasized the importance of community support in turning the vision of a clinical trials hub into a reality. "It felt like a dream just a few years ago," she recounted. "Now, thanks to the kids and families like Simon's, we are on the verge of something significant."

Raising Pediatric Awareness

Simon’s natural curiosity and ability to engage with adults have caught the attention of Dr. Doan, who noted that his interest in people set him apart. “Children represent 15 to 20 percent of our population, but they are 100 percent of our future,” she said, highlighting the need for more comprehensive pediatric trials.

Changing the Narrative

While much of pediatric medicine has traditionally relied on research from adult treatments—which can be inappropriate or harmful for children—this new clinical trials hub aims to change that narrative. Dr. Doan highlighted the rarity of pediatric clinical trials, largely due to lack of profitability, and stressed the need for infrastructure and capacity to make them more accessible.

Success of the Crystal Ball Fundraiser

The Crystal Ball fundraiser has been a significant driver in this initiative, with the 2024 event raising over $4 million. Simon played an instrumental role, furthering momentum during Giving Tuesday by dedicating funds raised through the Cure MPS campaign to support pediatric clinical trials.

A Mother's Belief

Becs Hoskins, Simon’s mother, expressed her belief in the campaign’s power. “It’s about finding new treatments and cures for children's diseases, and we want to put our efforts into that,” she shared, as she noted her son's burgeoning love for performing and being in the spotlight aligns with the spirit of the campaign.

Looking Ahead

As the super hub takes shape, a team of experts is being assembled, including clinical trial nurses and regulatory staff, with the aim of expanding to meet growing demands. As of a recent count, Simon's fundraising had just $255 to go to reach a $10,000 target. No surprise to those who know him—Simon is accustomed to smashing goals.

Conclusion

Keep an eye on this remarkable boy as he continues to turn his charm and determination into a beacon of hope for children facing similar battles!