Local siblings Jason and Sophia Fung are gearing up to take part in this weekend's Canuck Place Adventure Race, but the event is about so much more than just racing.
Fifteen-year-old Sophia was diagnosed at birth with a rare genetic abnormality that now encompasses the majority of her organs and systems. She has been living with the disease her entire life, however, the last year has become increasingly difficult, says mom Beverly Pomeroy.
Sophia developed hypoventilation, which means she stops breathing, and lives with chronic pain.
Pomeroy says her daughter used to get out regularly - she attended school, dance classes and played soccer.
"She used to do things that brought her out into the community," she says.
But now the hypoventilation means she requires oxygen at times and she is on a variety of medications to help deal with the pain. For the most part, she has become isolated at home and sleeps the majority of the time.
"She's made her world smaller," Pomeroy says. "We try to create opportunities for people to come to her."
Sunday's race is a significant event for the family because not only does it give Sophia a chance to get out and participate alongside her older brother, but it gives her the ability to give back to Canuck Place.
Sophia and Jason will be taking part in the race's adaptive component, which includes a 500-metre kayak, two-kilometre bike ride and a one-kilometre run. Adaptive equipment will allow Sophia to take part in the race with her brother and teams of other levels - an adult race that includes a three-kilometre kayak,
20-kilometre bike ride and a six-kilometre run, a teen challenge on the same course and a kids' course, which starts with a series of obstacles followed by a two-kilometre bike and a one-kilometre run.
Funds raised will go directly to supporting Canuck Place, a place Sophia and her family have come to rely upon as they deal with her disease.
Canuck Place was the first pediatric hospice in North America and is world renowned for its leadership and expertise in pediatric pain and symptom management, and end-of-life care. "It isn't something you necessarily want to qualify for, but if you do, you can't get any better support," Pomeroy says.
"She loves Canuck Place. They've known her for 13 years."
Aside from the medical assistance, events like the Adventure Race and the Canuck Place Teen Camp give Sophia and Jason the chance to be siblings in a supported environment.
The camp gives teens and their siblings the opportunity for two nights away without parents, and for kids like Sophia, to experience summer camp - all with care and support from Canuck Place staff, nurses, volunteers and peer counsellors.
"It's a really cool, inclusive environment," says Jason.
Sophia and Jason will be at the start line Sunday morning at Jericho Beach ready to take on the race together.
For more information, or to make a donation, visit www.canuckplaceadventurerace.ca and click on "donate" to search for Bev Pomeroy.
