Amanda Levesque’s daughter Ariana is one in every of lower than 70 folks worldwide recognized with GNB1 syndrome
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At seven years previous, Ariana Levesque has seen extra medical doctors, specialists and therapists than most individuals will see in a lifetime.
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However after a profitable trial final yr, her household hopes a Canadian firm’s so-called “robotic legs” will in the future assist the younger Calgary lady stroll on her personal.
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Identified at two years previous with a uncommon genetic situation often known as GNB1 syndrome — one in every of solely two Canadians and fewer than 70 folks worldwide recognized to have the illness — Ariana has spent her total life out and in of medical doctors’ places of work and recovering from surgical procedures associated to the uncommon illness. The illness has brought on Ariana extreme mobility issues – she normally will get round in a wheelchair – together with epilepsy and delayed development.
Whereas her mom says Ariana is functioning cognitively on the similar degree as her friends, she has to work a lot more durable than others her age to study common motor expertise.
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“She’s such a decided little lady — like she’s a firework,” mentioned Ariana’s mom, Amanda Levesque. “When she actually will get going, she actually places her thoughts to it and works actually arduous. She has achieved many issues within the 5 years since we had her prognosis.”
Robotic-assisted stacker helped Ariana throughout examine
After years of trying and attempting each remedy and remedy accessible, Amanda thinks she’s discovered an possibility that might be an vital step in her daughter’s journey to studying to stroll.
On Sunday, two days earlier than Uncommon Illness Day on Feb. 28, the household launched a GoFundMe marketing campaign to assist elevate cash for a robot-assisted walker, constructed by Ontario-based firm Trexo Robotics.
The machine—which gently pushes mobility-challenged kids’s legs with a correct gait, offering train and coaching—was an extremely great tool for Ariana throughout a College of Calgary examine funded by the Alberta Kids’s Hospital Basis, which study expertise and its advantages.
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The robotic legs, even over a brief trial interval of three months, have been an enormous success for Ariana. The household and researchers have been amazed by her progress.
“After coaching within the Trexo, even earlier than she completed her coaching interval with us, she was in a position to stroll along with her (hand) walker or throughout the room,” mentioned Dr. Elizabeth Condliffe, the principal investigator of the examine performed by the college’s Pediatric Onset of Neuromotor Impairment Lab.
“So which means that she has gained the power to do extra train herself. She gained the power to navigate her setting.”
Condliffe says she expects the analysis to seek out gadgets like Trexo “neuroplasticity-inducing” means they may assist folks like Ariana have skills they did not have earlier than, even after they’re not utilizing the gadget. She additionally famous that you will need to embrace uncommon circumstances, like Ariana, in additional common research.
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“What is absolutely related is the general operate she has and never her particular prognosis,” Condliffe mentioned. “We are able to embrace folks with uncommon ailments on this examine, and I truly assume that is crucial to do.”
‘She was so proud’: Household desires to purchase their very own machine
As Ariana’s trial got here to an in depth and the Levesque household bid a tearful farewell to the machine, they’re in search of assist to lift the $50,000 to purchase a Trexo of their very own.
“My coronary heart simply melted to see her being part of it in a complete completely different approach. She was so pleased with herself,” Amanda mentioned.
“After seeing what simply three months did with that Trexo, I actually hope that I can present that chance for her.”
With Ariana presently recovering from reconstructive remedy on her hips earlier this month, Amanda says they’re beginning at “sq. one” by way of her rehabilitation. The household hopes the system could also be step one on a path to permitting Ariana to in the future stroll on her personal.
“The Trexo might be the important thing to getting her out of a wheelchair,” Amanda mentioned. “(It is) now such a vital time for her. It is form of a make-or-break second.”
mrodriguez@postmedia.com
Twitter: @michaelrdrguez
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