B.C. siblings with a rare degenerative disease inspire and help each other

On This Is BC, we meet a brother and sister who are losing their vision to a rare disease called Stargardt diease. Chase and Ava Henderson show amazing strength and inspire each other. As Jay Durant reports, both help fundraise and are setting an example for others.

A B.C. brother and sister with a rare degenerative disease have been losing their vision since a young age, but it hasn’t stopped them from competing in the activities they love, while inspiring and supporting each other through their challenges.

Chase Henderson loves basketball, and despite the fact he’s slowly losing his sight, he fits right in.

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Basketball practice for him and his fellow 10-year-olds looks exactly how you would imagine: players launching thee point shots from everywhere and imitating flagrant fouls just for fun.

“I think of it as a super power. Because you have bad eyes you have stronger sense of smell, ears, and touch,” he told Global’s This is BC.

Chase and his and his 16-year-old sister Ava were diagnosed at a young age with a rare degenerative disease called Stargardt disease.

“It was really hard. Really, really hard and it doesn’t get any easier when you hear it for the second time either,” their mother Christina Henderson explained.

Each of the children is at a different stage of vision loss. Chase’s acuity is diminishing, Ava is legally blind. Both are doing their best to adapt to everyday life.

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“They never complain. They never complain about it,” their dad Burt Henderson said.

Through it all, they’ve shown amazing strength and support for each other.

“She really teaches me everything, so I have nothing to teach her,” said Chase with a smile.

In addition to basketball, Chase also plays hockey, which comes with its own challenges.

But he still has enough vision right now to score some great goals — although sometimes he doesn’t know it’s in the net until he hears the cheering. He lost count of the total this year.

“Lots, yeah. Let’s just say lots,” he said, laughing.

Ava has been dancing for the past 12 years despite facing many difficulties.

“All the lights shining in my face I can’t see, and I’ve bumped into people on stage before. And I’ve almost fallen off the stage,” Ava said.

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The Hendersons play a big part in local fundraising events, while sharing their emotional story in support of research for a cure.

“I would rather her have better eyesight than me because she has worse eyesight than me right now,” Chase said on a video produced by Fighting Blindness Canada.

“Just knowing I don’t have as many opportunities as other kids, that kind of is hard,” Ava explains later in the video.

But they still have very big dreams, their paths will just be a little different. Both are always pushing forward with an incredibly inspiring attitude.

“You have to find your way in how you’re going to achieve your goals because there is a way,” Ava said. “There’s going to be people who tell you you can’t do it, but prove them wrong,” she added.

“Being different, I would say, is better than being the same as everybody,” Chase said. “That’s boring.”

To contact Jay Durant with a story idea for This is BC, email him details and contact information at thisisbc@globalnews.ca

© 2022 Global News, a division of Corus Entertainment Inc.

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