Long, blind walk to benefit Nova Scotian baby with rare disease

Christopher Gooding
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 SPRINGHILL – How far do you think you could make it if you walked blindfolded from Springhill to Truro?

David Galloway says he will go all the way and he’s going to do it one guided step at a time for a little girl in Truro afflicted with a rare congenital disorder that has left her blind and deaf. It’s an act of friendship, Galloway says, because the young girl’s mother – Kristen Langille of Truro – was a high school friend.  

“Last year, once I got home here… I was on social media and catching up with everybody and then, bam, I was hit by this," he said. "I’m reading [Georgia] is not just deaf. She’s blind and has seizures. It was kind of a mystery at first. It wasn’t like she was born and it all came out.”

Georgia was born a relatively healthy girl, albeit a breach birth. In time, however, it was discovered some of her movements were wrong. When it looked like she was trying to sit up it was, in fact, seizures. It was a long road ahead to diagnose her, with many trips to the IWK and research. It was determined she had glycosylation type 1-a (GT1A), a rare congenital disorder which prevents her liver from breaking down food to sugar for protein and development.

“She has a feed tube and special pablum for feeding they only make at the IWK. That was the first real eye-opener of what’s going to happen because it’s not medication, so it’s not covered under medical plan. It costs $500 a month and only available at the IWK.”

As the facts the family face started coming out, Galloway felt the urge to do something for the family more out of the ordinary. The idea of a blindfolded walk, bridging his hometown with Georgia’s, started to form. A walk that could not only raise money, but awareness.

“I participated in a few of the fundraisers they already had – the Split Crow has been very good to them, they had a ball tournament, a golf tournament, people making bracelets for them – but that’s all community-based and they’ve pretty much exhausted at this point what they can do, so they needed to reach out. [GT1A] is such a unique thing. These things aren’t going away for this family. It’s only going to get more expensive, so I started putting this together.”

Galloway will tentatively leave Springhill on April 21 – blindfolded to at least 75 per cent reduced vision – will be guided by a support team and stop at key destinations along the way to Truro. Where some long-distance walkers look to make time, Galloway is looking to make dates and stay safe while speaking to as many media outlets and organizations as he can along the way. Getting the message out of GT1A and Georgia’s story is the story, he says.

The future for Georgia will be complicated. Right now she’s still at an age where her parents can carry her, but as she gets older she will need a specialized wheel chair, specialized assistance and much more. Creating awareness now, Galloway says, is hopefully the beginning of creating Georgia’s future network with the professionals who will be part of her ongoing life and strengthening the family that loves her.

“The birth of a child should be the happiest occasion but now they have all these unanswered questions… there might be that one person out there that might have some answer that might not be in the immediate area who finds out about the walk.”

To learn more about Galloway’s walk, look for Opening Eyes For Baby Georgia on Facebook.

Organizations: IWK

Geographic location: Georgia, Truro

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