Family of 4-year-old with neurological disorder hopes to raise money for robotic walker

In February 2021, Amanda Burritt and her partner Jamie Shingleton had their world rocked when they found out their newborn daughter Emma was living a rare neurodegenerative disease called KIF1A associated neurological disorder (KAND).

"At the time, we they didn't really have much to tell us, because there aren't a lot of people diagnosed with it," said Burritt. "It has been very hard. It's never easy taking care of a disabled child."

Born in 2019, Emma was just six months old when her parents noticed she was falling behind in her milestones, not crawling and not sitting up without falling over.

Eventually, Emma was brought into a pediatrician before eventually checking in with a neurologist at the BC Children’s Hospital in Vancouver.

After producing little results, she would undergo genetic testing where the family found out she had the rare neurodegenerative disease.

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.

"The disease just keeps taking things from her."

At the time of her diagnosis, the family was living in Kamloops.

Amanda would eventually quit her career as a nurse to become a stay at home caregiver for Emma.

Jamie quit his job as a machinist in search of higher-paying position to support the family.

They ended up moving to Calgary in 2021 after researching where the best support and resources were for Emma. 

"We found out Calgary had the best," said Shingelton. "So we sold our house, I quit my career to become a stay at home caregiver."

A joy that that Emma still has is dancing, which she does despite all that KAND has taken away from her.

Her family is trying to bring more normalcy to her life, which is why they launched a GoFundMe in hopes of raising $50,000 to get her a Trexo robotic walker.

"Being able to raise this amount of money and give Emma a Trexo would mean the absolute world to us," said Burritt, who describes the item as a "walker with robotic legs."

It would allow Emma to feel the movements of walking, helping her build strength while providing benefits to her development.

The company says the high cost of the walker is due to the research and development required to make it.

"It's an expensive device to make and maintain," said Jenn Horowitz, who is Trexo Robotics' head of marketing.

"They do come with a warranty. We do handle repairs.

"The technology would be dated very quickly if we weren't constantly innovating and improving software and hardware."

Horowitz points to upgrades made last summer allowing users to walk backward, "which has significant benefits for the body and brain."

Emma was able to participate in a trial at her school with the walker, which her mom says she loved.

"I recently was saying that this probably seems like an impulse buy, it probably seems like we just want this, but really we really need, this would be so good for Emma."

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

The family of a Calgary with a rare neurological disorder is hoping to raise enough money to help her get a robotic walker.

A&W fundraiser

The A&W in Auburn Bay has stepped up to help the family achieve their fundraising goal. 

On Wednesday, June 5, $2 from every combo sold (including third party orders) will be donated to the fundraiser, and 100 per cent of all cash donations will be matched.

There will also be a silent auction from 4 to 7 p.m., with all proceeds going to Emma for her Trexco.

"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.'"

"We are thinking it is going to be a good fundraiser."