Riley Tenhoeve loves Cars.
And while the Topham Elementary kindergartner isn't old enough to drive them, he adores the animated Pixar film Cars from 2006.
When he's feeling well, five-year-old Riley's engine doesn't sit on idle - he always seems to be moving - and he'll likely be jumping for joy on Friday (June 15) when he and his family visit Disney's California Adventure for the Cars Land opening, courtesy of a wish granted through Make-A-Wish BC.
"Make-A-Wish contacted me, I did all the paperwork, they were here less than a week later, and it was all set up," Riley's mom Selena recalled.
It's a late spring adventure for Riley, one of only 200 people in the world to have Chediak-Higashi syndrome, a life-threatening genetic disorder with no known cure where, without a successful bone marrow transplant, children often pass away before the age of 10.
Essentially, Riley has no immune system and no blood clotting ability.
He is the only known case of the disease in Canada.
Profiled in the Oct. 27 Langley Advance [Handmade bracelets help Riley] the energetic tyke is scheduled to have his third bone marrow transplant in August, two months after his visit to Cars Land.
"We found out this summer that he needed a third bone marrow transplant and we knew Cars Land was opening," Selena said. "Right now, everything he's wearing is Lightning McQueen."
Riley's appreciation of Cars knows no bounds. From Cars toothpaste to hundreds of Cars related toys, socks, bedding, bike, clothing, books and even Cars-themed food, Riley has it all, making him the ideal candidate to be at the opening.
"He's so Cars crazy now, I can't even imagine what he'll be like when we finally get there," Selena said.
Riley was scheduled to have the transplant in April but Selena and her husband Lance postponed it so the family, which includes Riley's nine-year-old brother Brayden, could fit in some summer fun.
Make-A-Wish grants the special wishes of kids three to 17 years old who have life-threatening medical conditions.
Riley has undergone two bone marrow transplants and had a third of his lung removed, all before he turned two.
The little boy Selena describes as a "real life superhero" now requires a third bone marrow transplant, because his donor cells have failed.
"Without the transplant he could catch a virus," Selena said.
If Riley does catch a virus which puts him into the accelerated phase, he can be treated with aggressive chemotherapy and steroids to try and put it into remission.
"Then we would go to transplant, so he could die of overwhelming infection, and probably would if we didn't already know he had it," Selena told the Advance in October. "We are lucky that they [doctors] know what we have and he is being followed closely - we just hope we get to transplant before it happens."
Currently, Riley has about two per cent donor cells working but they seem to be functioning very well, Selena noted.
Riley's first bone marrow transplant "failed miserably," said Selena, who added, "He's got scars all over the place. He spent his first birthday in ICU on a ventilator."
It's imperative for Riley that his upcoming transplant be successful, Selena said.
Before the transplant, Riley will be enduring myeloablative, a harsh form of chemotherapy.
"The myeloablative takes out his whole immune system," Selena explained. "Risks are much higher this time because of organ toxicity. This is the third time he's had chemotherapy, so the risk of death is increased."
Selena remains positive, and Riley takes after his mom. He's actually excited to go to the hospital.
"He said, 'That's okay, Mommy, we'll just play. Just you and me, Mommy, we'll play,'" Selena said.
A successful transplant will resolve Riley's immune issues, but the challenges won't end there.
"There are progressive neurological issues as he gets older - decreased cognitive function, balancing issues_" Selena said.
With so much ahead of Riley and his family, Selena said their trip to California provides a much-needed escape.
"The last time we went anywhere as a family was to New York for the Chediak-Higashi conference, but this is going to be fantastic," Selena said.
To support Riley, and to raise funds to find a cure for Chediak-Higashi Syndrome, Selena's cousin Marcia Duncan is selling handmade bracelets at Shine Jewels, a store she co-owns in Fort Langley.
The family is making bracelets for sale as a fundraising activity for the Chediak-Higashi Association. Bracelets are available at Shine Jewels in Fort Langley for $5 each.
"They are still at Shine Jewels," Selena said.
Anyone interested in buying a bracelet can contact Selena at email@example.com.
For more information about the Make-A-Wish Foundation of BC & Yukon, or to donate in-kind gifts of goods or services, call 604-688-7944 or visit www.makeawishbc.ca.
@ Copyright 2013