Local seven-year-old Ariana Levesque is among the less than 100 people across the globe that has GNB1 Syndrome.
GNB1 Syndrome was first identified in 2016 and those who have the rare genetic mutation suffer from hypotonia (low muscle tone), possible seizures, ophthalmological manifestations, as well as growth delay.
Amanda Levesque, Ariana's mom, says that Ariana has gone through extensive therapies across the country. And while her daughter did have improvements, her gross motor skills, which include sitting up and walking were not improving as quickly as her mother would hope. Even a few steps for Ariana would require much support from her mother.
"[I'd] get her into the walker and I would have to help her move her leg. She gives it her all and she's so determined and she tries."
It wasn't until Ariana was chosen to participate in a 3-month trial study with The University of Calgary using a therapeutic piece of equipment called Trexo Robotic Legs, which is manufactured by Trexo Robotics, an Ontario-based company. With the help of the robotic legs, Ariana's mom witnessed some incredible milestones in her daughter.
"She was able to walk across the room, which is something that over the five years of extensive therapy, she had never been able to achieve. I started screaming and I started yelling, 'you're doing it, you're doing it,'" she said. "I was just so ecstatic. Ariana just lit up at the opportunity she absolutely loved to be walking. She loved to be a part of it."
However because the robotic legs were part of the trial, which has since ended, little Ariana had to part with them.
"She was so sad when we dropped off the Trexo at the hospital. She had a kind of sad face and she realized [in that] moment that we were leaving and the Trexo wasn't coming with us and she started crying. It just broke my heart."
Levesque enlisted the help of her close friend, Airdronian Vanessa Asmus, to try and see if fundraising could be set up in order for the family to be able to purchase the equipment on their own. Considering that the equipment costs around $50,000 and is not covered by grants, bursaries or insurance, Asmus decided to create a Gofundme page to help little Ariana.
"It's really hard asking for help; for me, at least - it is really hard. I looked at the situation that I was in, and I was thinking I have to try everything to give my daughter this opportunity," Levesque said. "But, I am so overwhelmed and I just feel so blessed with the people that have contacted me; to have completely random people see Airiana's story, look at it and want to help her.. it is heartwarming."
Ariana is currently recovering from a bilateral hip reconstruction that occurred last month. Her mother said that as her daughter continues to grow, she is at a fundamental crossroads in her development and therapy; a crossroads she hopes that Ariana will be able to navigate with the help of the Trexo Robotic Legs. Levesque said that if the family is able to purchase the robotic legs, the first thing little Ariana will do, is to go for a stroll in her neighbourhood.
"She's always been in a wheelchair or in a stroller. [But with the Trexo] she was able to walk on the pathways and she was able to walk by the other kids that are playing in the street and stop; they were at the same level," Levesque said.
To date, over $11,000 has been raised through the Gofundme campaign.
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