(Supplied)

By Josh Hall (Twitter: @Vancan19)

let's give ariana her legs!

Auction Saturday to help 7-year-old with ultra rare condition get access to robotic legs

Apr 26, 2023 | 1:35 PM

An auction being held April 29 in Red Deer is to benefit a young Alberta girl with an extremely rare medical condition.

Ariana Levesque, seven, is one of an estimated 70-80 people worldwide known to be living with what’s called GNB1 Syndrome.

GNB1 Syndrome, as described by Ariana’s mother, Amanda, is caused by a mutation to the GNB1 gene, which affects the body’s ability to communicate with vital pathways. This can lead to, among other things, low muscle tone, seizures, and delayed growth, not to mention countless hospital visits, and surgeries to manage it. The syndrome was first identified in 2016.

Ariana, who was born with the condition, used to live in Red Deer, but the family moved to Calgary in recent years to be closer to the children’s hospital.

“Ariana loves music, she’s very social and loves being amongst other children, she loves singing and playing games, typical seven-year-old stuff,” says Amanda.

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“She’s in grade one at a special needs school, and she’s a thrill-seeker who loves roller coaster rides at Calaway Park, and anything to do with motion, like swings. She also loves water slides and swimming. She’s quite a go-getter and has a great spirit.”

Last fall, Ariana was part of a three-month trial at the University of Calgary which saw her experience and test the use of Ontario-made Trexo robotic legs. From that, her ability to walk increased, but she still required a bilateral hip reconstruction, which was successful earlier this year.

Despite some hiccups, doctors believe with the hip surgery complete, and continued repetitive use of the Trexo legs, Ariana’s muscle memory and overall mobility should continue to improve.

But continued access to the Trexo mechanism is the challenge, as obtaining a set for personal use costs approximately $50,000. A GoFundMe has been set up to help raise those funds, and the aforementioned auction this weekend will aid the cause.

The live auction and dessert night is free to attend (or by donation), and it starts at 6:30 at the Red Deer Resort and Casino. All proceeds go towards the Trexo legs.

Scott Douglas, a long-time auctioneer from Stettler who was paralyzed from the waist down in a 2004 snowmobile accident, heard about the youngster’s story and was inspired to help.

“I was so blessed by her enthusiasm through all she’s been through, and it was my sincere desire to help out and make this auction happen, so she could get the new legs that she needs,” says Douglas, a client ambassador with United Way Central Alberta.

“I have so much love and compassion for others trying to make a go of life through challenges they may encounter. Seeing her story, I wanted Ariana to be able to experience and feel the same freedom I felt when I got my first wheelchair in 2004. It’s a freedom of new beginning, and I was truly inspired by her willpower to not let life get her down.”

To the family’s knowledge, there’s just one other Canadian with GNB1 Syndrome, with connections being made through a global support group.

Amanda says the support of Douglas is exceptional, as is that of anyone who’s contributed to the GoFundMe since it launched in February.

She also says the sooner Ariana can regain access to the Trexo legs, the better it will be for her progress.

“To have a complete stranger be all in, especially when he has his own circumstances; her story just spoke to him, and what he’s done is such a blessing,” says Amanda.

“Ariana was in hospital recently with an infection, meantime he’s just taken off with this. And he’s inspirational himself. His outlook on life is admirable, and every conversation we’ve had is a bright one. He’s not getting anything out of this other than he knows he’s helping someone potentially not have to live in a wheelchair. It’s amazing.”

More information is also at gnb1.org.