Heston Letcher is eight years old, and lives with Sanfiilippo Syndrome, a terminal and regressive condition. This year he is being featured for the Variety Children’s charity. (File contributed/ Kerena Letcher)

Victoria boy is face of upcoming Variety Children’s Charity telethon

Heston Letcher is eight years old and lives with a rare genetic condition

A Victoria boy living with a rare genetic condition will be featured at this year’s Variety Children’s Charity Show of Hearts, a telethon fundraiser that supports children with medical needs.

Heston Letcher is eight years old and lives with Sanfilipino Syndrome, a condition that strips him of an enzyme necessary to process sugars properly in his body. The sugars aren’t recycled and instead build up, causing regressive and terminal damage to the brain. People living with Heston’s kind of Sanfilipino Syndrome are likely to live to be 10-13 years old.

Heston never learned to talk, but he used to walk and eat before his condition grew worse. Despite his struggles, he’s had a huge impact on his family and community.

“My youngest boys, I don’t think they even realize that Heston is that different. For them, seeing a child in a wheelchair is no big deal,” said Kerena Letcher, mother to Heston and four other boys.

“For my older boys, it’s been huge. It’s not just the experience with Heston, but with the community around Heston.”

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A large contributor to the Letcher family has been Variety Children’s Charity, which has given them a wheelchair lift for their van, a specially-designed stroller, lift tracks within their home, and a specialized temperature-controlling mattress for Heston, whose body has lost the ability to properly regulate its temperature.

“It’s amazing to have something like Variety. They help with programs and equipment – such a variety of things it’s just mind-blowing, because everyone’s needs are different.”

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Letcher said when Variety approached them about sharing Heston’s story, the family did not hesitate.

“When an organization gives to us, we want to be open to give back if we can,” she said. “We know that if they’ve helped us, they’ve helped others, too.”

Variety’s donations have made it easier for the Letcher family to focus on making lasting memories with Heston, whose condition is progressing faster than anticipated.

“As more of his abilities have been taken away from him, we’re seeing more of his spiritual being, ” she said.

“He’s someone who is kind even though he can’t do anything, and someone who is gentle, even if you can’t ask him to grasp things,” Letcher said through tears.

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“He has character and he has things that you want. You want to be more patient, you want to be more kind, you want to be more gentle. And you look at this boy, so much has been taken away from him, and yet you want what he has.”

The 53rd Variety Show of Hearts Telethon will take place today, from 9:30 a.m.-5:30 p.m.

For more information, visit supporting.variety.bc.ca

nicole.crescenzi@vicnews.com


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