Thursday, October 27, 2011

Family sells bracelets to benefit Chediak-Higashi Syndrome

Last year we had the first-ever Chediak-Higashi Syndrome family conference. One of the families that came was Riley's family from Canada. Riley charmed everyone. You'd never guess watching him run around with so much energy just how much he'd already been through in his short life.

Riley's family is making bracelets out of pop tops to try to raise money. This article appeared in the local paper. How awesome!!!! And, the photo is great!!!!

Here's the article:

Handmade bracelets help Riley

Buying a bracelet in Fort Langley will help in the efforts to find a cure for an extremely rare blood disorder, that affects a young boy in Walnut Grove

By Troy Landreville, Langley AdvanceOctober 27, 2011

Riley Tenhoeve, five, and his mom Selena sported bracelets being sold to raise money to find a cure for Chediak-Higashi Syndrome, a rare blood disorder that Riley was born with.

Photograph by: Troy Landreville, Langley AdvanceFive-year-old Riley Tenhoeve is a pretty typical kindergartner.

The jovial Walnut Grove tyke is a ball of frenetic energy who never stops moving, keeping his parents Lance and Selena simultaneously entertained and busy.

His passion for dirt biking and quadding is so strong, most mornings he pulls the pillowcase off his pillow and plays what he calls, "pillow dirt bikes."

"He's crazy energetic," Selena said. "He never stops. He doesn't slow down unless he's asleep. He's very friendly and chatty. He charms everybody, everywhere he goes."

The happy-go-lucky tyke also happens to have an extremely rare blood disorder called Chediak-Higashi Syndrome.

To read the full article, go to:

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