Let's Give Ariana Her Legs

Thank you for visiting our GoFundMe for the courageous and strong Ariana.

Ariana was born with a rare disease called GNB1 Syndrome. So rare, in fact, that there are less than 100 people in the world with this condition. The science behind it is a mutation to the GNB1 gene that affects her body’s communication system. In short, Ariana’s brain does not easily communicate with her body's vital pathways, causing her low muscle tone, seizures, and delayed growth. Her life is filled with uncountable specialists, hospital visits, and surgeries to manage her disease. Because of this reduced cellular communication caused by GNB1 Syndrome, Ariana must work hard to learn everything she does and reconnect these vital pathways from her brain to her body.

Ariana received a diagnosis at age 2 and has been working hard every day since to gain the skills that will help her become more independent and be a ‘part of’ her peers. Over the past five years, Ariana has been in every therapy available in Canada, improving her core strength, fine motor, and communication skills. Her gross motor skills, such as sitting up and walking, are incredibly challenging for her. Ariana requires much repetition to connect these pathways before acquiring the skill. Traditional therapies offered have not been able to target what is needed for her to learn to walk, leaving her wheelchair-bound and fully dependent.

Despite her challenges, Ariana has an amazing spirit and determination. She 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. This study would allow Ariana to exercise her body and be a part of the world in a new and different way. Ariana was ecstatic to walk daily and took her robotic legs everywhere! When it was warm, she could be found walking along the sidewalks and pathways in her neighbourhood. When it was too cold to be outside, Ariana was doing laps at the grocery store, the mall, the swimming pool, and her brother's lacrosse games. She was so proud to be walking, and her overall health during that time increased substantially.

Near the end of the trial, Ariana could take steps in the manual walker, and the researchers were blown away by her progress. She had built some muscle memory and took functional steps independently for the first time; It was a life-altering moment for Ariana and her family.

As one of her many surgeries, Ariana underwent a bilateral hip reconstruction on February 2023. Every surgery she goes through sets her back and requires extensive rehabilitation. With the trial being over and no other opportunities for her to utilize the Trexo, Ariana’s family understandably wants to find a way to offer her the life-changing opportunity that the Trexo provides full-time so she can keep taking leaps forward in her current and future recoveries.

The Trexo comes with a price tag of $50,000 and does not qualify for any funding assistance. After Ariana’s massive success in the short trial, the researchers and her family do not doubt that her regularly accessing this equipment will profoundly affect her well-being. It will be the difference between giving her the opportunity to live outside her wheelchair or being fully dependent on it for the rest of her life.

Thank you for helping us give Ariana her robotic legs. Every contribution brings her family one step closer to giving her more independence and the ability to walk.