Five-year-old Riley Tenhoeve of Langley, B.C. has a blood disorder so rare there's believed to be only one case in Canada, but his family isn't giving up hope of finding a cure.
Riley was born with Chediak-Higashi Syndrome, which pales the hair, eyes and skin. Many who are diagnosed with the disorder die before the age of 10.
His disorder was diagnosed when he was six months old. By the time Riley turned two, he had already undergone two bone marrow transplants, his mother Selena said.
"He was basically born without a functioning immune system, no blood clotting abilities," she said.
Though his last transplant went well, his family recently found out he's going to need a third, likely in the spring.
In the meantime, Selena and Riley's big brother Brayden have been working on a way to raise both funds and awareness: hand-made bracelets.
"It kind of just snowballed all of sudden," Selena said. "We talked about selling them but we didn't really know where."
They ended up at her cousin's store, Shine Jewels, in Fort Langley. The store says word of mouth has been spreading; among the buyers is Riley's soccer coach, Mike McNamara.
"We decided to come down here and purchase one for all the team," McNamara said. "We've got our pictures on Wednesday night so it'll be a good opportunity to get behind Riley."
Selena says all proceeds from the $5 bracelets will go to the Chediak-Higashi Syndrome Association. Her hope is that the money will bring others with the disorder together, and ultimately help find a cure.
"There are a lot of good people in the world, a lot of people doing awesome things," she said. "We're just so grateful that they're thinking of us and our family."
For information about the disorder, visit the Chediak-Higashi Syndrome website in the Hermansky-Pudlak Syndrome network.
With a report from CTV British Columbia's Maria Weisgarber
