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'Amazing': Cookstown boy with rare disease receives 'robot legs'

Family began online fundraiser, gathering more than $48,000; 'I’ve just been in shock with how it’s been going. It just speaks to the community,' says boy's mom
George Dempsey, who has a rare form of spinal muscular astrophy, is excited to be getting new 'robotic legs' that will help him walk.

Parents relish the moment when their child takes their first steps and learns to walk. It’s a memory that will stick with them forever as their child starts this new adventure.

For Cookstown’s George Dempsey, a four-and-a-half-year-old boy with an infectious personality, it’s been a longer journey. But for his parents, Lauren and Rob, it’s been one filled with perseverance and, ultimately, hope.

When George was one he was diagnosed with special needs and soon after the Dempseys found out he has a rare form of spinal muscular atrophy (SMA). He has X-linked infantile spinal muscular atrophy on his UBA1 gene, a form of SMA so rare that there are only a few cases known globally. 

Due to his SMA, George is unable to stand and walk on his own. But in the fall, Rob had seen a post online about Trexo Robotics, a Canadian company that builds wearable robotics to help children with disabilities and walking impairments experience walking. 

“He sent in an online request form and we heard back a couple weeks ago,” says Lauren. “We went through a process of sending in photos and documentation and videos showing how George’s legs move and the range of motion as well as what type of support he had. They told us he’s a candidate and it would work for him.”

With the expensiveness of it all and insurance not covering the products, Lauren asked if George could try out the “robot legs,” as George calls them, to make sure he was comfortable using them and liked them before making the purchase. 

“So we went down to their showroom and he absolutely loved it,” says Lauren. “At first, he was nervous about it because there’s a lot of tinkering going on. As soon as he pushed play on the tablet and his leg moved, he was so excited.

"I said to my husband that I’d never seen him this excited," she adds. "He already has a stander he has to go in to and he hates it because they’re stationary and so he gets strapped into this thing just for the purpose of being in an upright position, but with this he can stand on his own and move. It’s amazing."

George has contractures in his knees, ankles and hips, and this will provide his legs with the stretches and movement required for bone development while loosening his contractures and allowing him to interact with kids at their heights rather than in a wheelchair.

“It will help his hip sockets form better and it gives him the sensation of moving his legs,” says Lauren. “As he uses the device more often, part of the technology on the tablet will show how much of the movement he’s initiating versus if the robotics is doing it all. It’s neat that it can track how much of the movements he’s initiating and show the nerve and muscle intuition that goes into it as he develops.”

Given the costly nature of the Trexo Robotics Gait Training System, Lauren and Rob decided to reach out to the community for help.

“We’ve really tried to get through all of this financially on our own, but when it came to this it was more of a want than a need; when there’s a need there’s some sort of insurance to help,” Lauren explains. “I wanted to get this for him, but you owe it all at once and I asked an SMA support group what I should do and they told me that we just need to swallow our pride and start a GoFundMe.”

Since starting the GoFundMe less than two weeks ago for George to get his robot legs, and with a goal of raising $50,000, there have been more than 400 donors and more than $48,000 raised.

“It’s been very emotional and overwhelming,” says Lauren. “From the outside, Rob and I have done a good job insulating family and friends from the financial and emotional aspects of it all. So when we reached out I knew there would be support, but I didn’t know there would be that much support.

"It surprised me to see that many people step up and share his journey and donate to it. The amount of donations from people we don’t know has been mind-blowing. I’ve just been in shock with how it’s been going. It just speaks to the community.”

After all of equipment purchases, doctors appointments, lengthy hospital stays, and modification to their house and play structures, the Dempseys got some good news. Last week, they made it official and paid for the Trexo Robotics Gait Training System to get George his robot legs.

“I told him the other morning and I said, ‘Daddy just paid for the robot legs,’ and he said, ‘home,’ and I told him soon and he did his little wiggle dance that he does when he’s excited,” Lauren says.

“It was such a heart-warming moment because he was so excited. It’s just amazing because he’s literally always sitting in various things and never gets a break from being in that position. Everything with the robotic legs is completely different than anything he’s experienced. So for him it’s this totally new and exciting adventure," Lauren says.

Being told there’s no treatment for George’s form of SMA and that he would be terminal by age two was one of the many barriers the Dempseys' son has overcome.

With the support of Lauren, Rob and their daughter Adeline, George has been able to push far beyond expectations and Lauren hopes their story can inspire others to keep pushing through the tough times. 

“I think it gives other parents who feel lost so much hope that something like this is out there and George just continues to move forward,” said Lauren. “If this gives anyone who’s sitting in the hospital with their sick kids just hope that there will be these moments of happiness that come up, that would mean the world to me. There’s a lot of dark days, so as few and far between as the light ones can seem, to know they’re there and can make up for it makes it worth it.”

Donations to the Dempsey family's GoFundMe page for George can be made by clicking here.