Her body was ravaged by meningitis septicaemia in 2007 when she was just 15 months old. Doctors told her parents that children in that state rarely ever survive, but Tilly Lockey proved them wrong and survived following a successful operation to have both arms and her toes amputated.
Today, 14-year-old Tilly is still that determined little fighter who has continued to soldier on and has grown up to do everything anyone else can do. She was invited to speak at the SingularityU South Africa Summit last month, and we caught up with her ahead of her talk.
“It’s really interesting to be here. Everyone’s just talking about what they’re achieving all around the world,” Tilly tells us.
She was the youngest among 30 speakers and educated the audience about her 3D-printed bionic arms from robotics firm Open Bionics, and discussed how the company is trying to expand and make it available worldwide, including in Africa.
But before she received the arms, she didn’t have the freedom to do everything she wanted to – including some things someone with arms wouldn’t even think of.
“Since I grew up without hands, it felt natural to me and I kind of adapted, but something that nobody would understand, is that when I talk to people I’m very expressive with my hands as everyone else would be – but there’s no fingers there.
“So I would basically be talking with my hands and just wave around my arms and stuff. But with the arms, I can express myself with different actions and even do the ‘peace’ sign. It’s one of those things that people just don’t think about, that they take for granted.”
Old prosthetics were limiting in function
This young star, albeit an old soul, is also a talented makeup artist and regularly posts Instagram makeup tutorials for her followers. Although she had prosthetics (provided by the NHS) before her bionic arms, they weren’t very functional, she explains, and she found it easier to navigate her life without them.
“I think the misconception people have is that we want to look like everybody else, but in reality, we just wanted the prosthetics to help; we didn’t want to blend in. We wanted to be functional.”
The prosthetic hands at the time, she says, were "doll-like" arms that couldn’t open wide enough to hold a cup, so they couldn’t be used in everyday life, but she remains grateful to the NHS for reaching out to her.
Hero arms inspired by Alita
While researching 3D printing, Tilly’s mother, Sarah, came across Open Bionics, who were looking for a below-the-elbow amputee to trial their new, high-tech prosthetic arms. Tilly was chosen in 2016 and has since been working with the company to test prototypes of the Hero Arms.
She received the arms in January this year – they were gifted and presented to her in London by 20th Century Fox. To her surprise, they had another gift in store for her: walking the blue carpet and attending the premiere of Alita: Battle Angel, the film her arms were inspired by. The Alita design team worked with the Bristol-based robotics firm to build her the bespoke prosthetic arms.
“They blindfolded me when I was trying it on to check if it’s the right size. I thought it was going to be the same as my previous prosthetics,” she tells us.
But these hands are controlled by tiny electrical signals that respond to the muscles in Tilly’s limbs and lets her grip and pick up both delicate and heavy objects. Tilly simply squeezes her muscles to close the hand and flexes it to open. If she wants to change the grip, she simply flexes again. It’s the first of its kind to be medically-approved in Britain.
For Tilly, the arms have completely revolutionised her life. Having them means having freedom and independence. The arms are still a work in progress, Tilly says, and she’s working consistently with Open Bionics to improve the functionality and develop groundbreaking technology for amputees.
“Open Bionics believes in co-design, because if you think about it, they’re scientists – they can make the hands, but they also rely on the advice from the people who are actually using them. They need brutally honest feedback to get them to be the best they can be.” One of the things Tilly suggested could use improvement was the freeze button.
Getting the technology out there
“I found that if I was holding something and I would go outside in cold weather, I would shiver, and that would trigger a false muscle sensor and cause the hand to accidentally open and drop whatever is in the hand.”
To resolve the issue, Open Bionics created a freeze button that now causes the sensors to "pause" and prevent the fingers from moving, until the button is turned off.
There are a couple of other things they’re working on at the moment, including the hands’ wrist movement, Tilly explains, and she’s confident that that, too, will soon have improved functionality.
“It’s everything I could ever want in a hand. And it needs to get out there so that it can help other people as well.”
The hero arms are currently available in America and have been launched in Germany, Spain and France, and the company is doing their NHS trials in England, but their focus also extends to getting it to third world countries.
While some bionic prosthetics can cost as much as $90,000 (approximately R1.3 million), the Hero Arm, costs a much lower $10,000 (±R148 000), since it’s manufactured using advanced low-cost 3D-printing techniques.
Open Bionics might be a start-up company, with only five years in the making, but Tilly has high hopes for them. Back when the company launched, it comprised a small team of under ten people, but they have recently opened a new lab. At present, the company has over 100 employees.
Co-founder and chief operating officer of Open Bionics, Samantha Payne, told Friday magazine in October last year: “When we started in 2014, we decided to focus not only on bringing down the cost of prosthetics, but also on tackling the social stigma around disability. We found the best way to do that was to harness the narrative of superheroes and to make the devices super-stylish and enviable.
“We wanted children to walk into school and show off their new bionic hand and make their friends envious. It’s the exact opposite of the experience amputees had before, where they’d have a fake hand with zero functionality, or a prosthetic hook.
“Now we’re seeing this interesting social phenomenon where bionic devices have become cool. They’re more embedded in popular culture, more celebrated.
“It’s going to go really far, I think, and with all my crazy critique, I’m really optimistic," Tilly adds. "I brought in this huge vision board when I first started working with them three years ago, and I feel like we could achieve all of that."
The (prosthetic) future is bright
“If they achieved all of this in five years, it just makes me think about what could happen if technology is constantly improving,” Tilly says.
For Tilly, the impossible is merely a concept.
“I’ve done so many things that I’m proud of myself all the time. I’m still proving doctors wrong, even now."
If there’s one thing Tilly could change, it’s the way people think about her disability.
“People would always jump to the conclusion that I must’ve been bullied because I have a difference, and that really irritates me because I haven’t been bullied at all.
“They’ll think: ‘Ah, she must have lived such a terrible life.’
“People in my situation could be badly depressed, but I choose not to be. I choose to travel the world, share my story, and help other people as I go along, and so I’m just really proud of everything I’ve done, to get me where I am today.”
Tilly also wants people to start looking at the future of prosthetics with excitement.
“I just feel like these bionics are insanely cool and really fashionable; they’re not trying to blend in. They should be on all the catwalks. They’re the start of high-end fashion now into the future.
“I’m just really excited for the day where people would no longer call it my ‘disability’; where it is so advanced you go out on the streets and bionics are admired. And I feel like we could get there.”
Image: SingularityU South Africa Summit