5-year-old girl with rare neurodegenerative disease gets a robotic walker after Calgary community rallies to help pay for it

August 31, 2024 Canuck

All that stood between five-year-old Emma Shingleton, who has a rare neurodegenerative disease that has left her blind, and unable to walk, talk or crawl, and a robotic walker that could make her life a little bit brighter was about $50,000.

Unbelievably, with a little help from complete strangers, an A&W franchisee and the folks in the Calgary community of Auburn Bay, she got one before summer was done.

For Emma’s mom Amanda Burritt — who quit her job as a nurse in Kamloops, B.C.,and moved with partner Jamie Shingleton to Calgary in 2021 to become Emma’s primary caregiver –seeing Emma take her first steps in the Trexo robotic walker recently was an experience she will never forget.

“It was very surreal,” Burritt said. “Emma has worked her whole life towards taking steps. She’s done physio(therapy) since before she was diagnosed.

“She’s spent hundreds and hundreds of hours doing physio,” Burritt added, “and just her disease – due to the nature of it, she won’t ever walk on her own, so seeing her walk in the Trexo – it was something I never expected to happen for her, (but) thankfully, technology is very advanced now and she is able to walk with us now.”

500 people worldwide

There are only 500 people worldwide diagnosed with KAND. The disorder impacts Emma’s ability to speak, see and express herself, has lowered her muscle tone and delayed her development.

“So far KAND has already taken away her eyesight. She has little-to-no vision. She cannot walk, she cannot crawl, she can’t talk. She recently was also diagnosed with epilepsy,” said Burritt, in a June interview with CTV News.

“The disease just keeps taking things from her.”

The Trexo robotic walker allows Emma to feel the movements of walking, helping her build strength while providing benefits to her development.

Emma was able to participate in a trial at her Calgary school with the walker, which Burritt said she loved, prompting the family to set out to raise the prohibitive price tag.

“I showed her little sister Callie a video of Emma in the Trexo, and she got so excited and yelled, ‘Emma’s walking’ and grabbed my phone, and just seeing that would make me so happy,” she said.

In June, the A&W in the Calgary community of Auburn Bay contributed $2 from every combo sold and matched 100 per cent of all cash donations, raising around $5,000.

“We want to support (them),” said the franchise owner, Balwant Singh. “When I saw the little girl, the mom was emotional. We said ‘Yes, we will definitely do it.”

Overall, the family was able to raise $32,000, through a GoFundMe and a raffle that offered a package to stay at the Fairmont Chateau Whistler.

Then Trexo cut the price of the robotic walker to $42,000.

The family took out a $10,000 loan to cover the rest – they wanted to get it before the end of summer — and recently took possession of Emma’s robotic walker.

Community support

For Burritt, the experience of having the entire community reach out with support was stunning.

“It was a lot of money,” she said. “And it’s uncomfortable asking people for money, especially since we have done fundraisers for her disease foundation in the past – I came off (as) fairly crazy, but I would do anything for Emma.”

Amanda Burritt quit her job as a nurse in Kamloops and moved with partner Jamie Shingleton to Calgary in 2021 in search of better treatment for their daughter Emma, who has a rare neurodegenerative disease known as KAND

One thing Emma loves to do is dance.

She might have done a little the day the Trexo robotic walker arrived.

“She’s worked so hard, and, yeah, this just gives her a sense of normalcy,” Burritt said. “It’s good for her body, but it she also doesn’t realize that it’s good for her body.

“She enjoys it,” she added. “She enjoys physio now too, but physio is a lot of work. So, yeah, this is something that she can do for fun, and that’s still helping her.”

‘It hit her’

Burritt recalled the moment Emma realized it was her robotic walker.

“I think putting her in it, it hit her,” Burritt said, “because she had finished the trial in June, and then she hadn’t been in one since,”

“Then when we put her in it for the first time, she was just so happy and excited.”

There’s a famous line used in a different context in Tennessee Williams’ classic drama A Streetcar Named Desire.

“I have always relied on the kindness of strangers,” Blanche Dubois said.

After a summer to remember, Amanda Burritt would agree with Blanche.

“Thank you to everyone that supported Emma,” she said. “A lot of the donations did come from complete strangers, which, yeah, it’s very heartwarming to know that so many people want to see her succeed and be happy.

“It was a pretty amazing feeling to know that so many people cared,” she said. “Sometimes, this life can be very isolating, and you don’t realize that there are a lot of people that are there for you.

“And yeah, this just opened my eyes to that,” she added. “Even at the A&W fundraiser, a lot of people came just to meet Emma and say hi and it, and yeah, it was just really nice.”

What it means for Burritt is that Emma gets to be a little bit like any other kid.

“Just having that little aspect of normalcy,” she said, “and seeing her doing a bit of what the other kids are doing – it means a lot.”

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Canada News

5-year-old girl with rare neurodegenerative disease gets a robotic walker after Calgary community rallies to help pay for it

500 people worldwide

Community support

‘It hit her’

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