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Jan 18, 2018

Racing Against the Clock

FBC's Canada's Patient Registry

Unless there is a research breakthrough very soon, Shelagh Anson’s children will lose their sight in their teens.

Rowan and Caroline were born with Usher Syndrome, a disease that affects hearing and sight. They’ve both had hearing problems from day one, but cochlear implants have helped with that. They also have difficulties with balance, but their parents have worked hard to help them develop that ability.

The one thing that they can’t stop is the gradual loss of their vision.

Shelagh tries not to think about it, but sometimes when she looks at her two beautiful children, it hits her like a ton of bricks. “Even now, at only 10 and 11 years old,” says Shelagh, “their vision is getting worse. Night blindness—the lack of ability to see anything at all in the dark—has already set in. And it’s already affecting their lives.”

Recently, Rowan was looking forward to a Scouts camping trip but decided not to go when he found out that they would arrive and set up after dark. He was afraid and knew that while the other kids were running around and having fun, he wouldn’t be able to see anything at all. To him, the darkness would be absolute.

This has been a hard journey for the whole family but Fighting Blindness Canada (FBC( has been there for them every step of the way. The support of FBC donors has also given the Anson family hope—hope Shelagh says she clings to when she feels afraid or overwhelmed.

“Someday very soon, I hope I can tell Rowan and Caroline they don’t have to be afraid of going blind in a few years,” shares Shelagh. “I’m not giving up, and I hope you won’t either.”

Without further funding to move research along, it will be too late for Rowan and Caroline, so help us keep the momentum going by making a gift today!


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