Tilly Lockey: Inspiring and Changing Lives for Young Amputees
August 2019 Issue
"Septicemia marks were just appearing on her skin like raindrops."
That's what Sarah Lockey recalls about the day she and her husband thought they might lose their then-15-month-old daughter, Tilly. In January 2007, Tilly contracted meningitis B. It hit Tilly suddenly—and very hard.
After Tilly's initial diagnosis of an ear infection, Lockey went to her parents' house so they could help take care of the toddler. But in the coming hours, Tilly became increasingly lethargic, and Lockey's father noticed that she seemed "transfixed" in front of the television.
"In hindsight, that is one of the symptoms of meningitis," Lockey says.
Every Second Counts
Later, Lockey noticed bruising on Tilly's body during a diaper change. Lockey had recently read an article on meningitis and recognized the bruising as one of the signs of septicemia. Septicemia occurs as a result of blood poisoning by bacteria.
"We knew then right away, and I rang the ambulance," Lockey says. "I turned around and my mom was holding Tilly and she was bluish-gray. I grabbed her and ran out the door to meet the ambulance because I remembered something I read saying that every second counts and to act fast."
Paramedics also quickly recognized the septicemia and alerted the hospital that a serious case of meningitis was on the way. By then, Tilly was in and out of consciousness.
"By the time I got in the room, they had her on the table and they were cutting off her clothes," Lockey recalls. "They told us they thought Tilly was going to die—and I immediately began to throw up."
Physcians made the decision to send Tilly to Newcastle General Hospital, which has one of the top pediatric intensive care units in the United Kingdom (UK). Staff told the parents to say their goodbyes, but they refused.
"We told her we were right there and to listen to our voices because we'd be with her every step of the way," Lockey says.
To have any chance at survival, Tilly needed to have a complete blood transfusion and be put into a medically induced coma. The Lockeys were instructed to go home and pack for what would be a long hospital stay if Tilly did recover. When they returned to the hospital, they were taken to a room where they waited to find out if their daughter was still alive. Finally, a nurse took them to see Tilly.
"She didn't look human," Lockey recalls. "She was swollen and covered in black marks, and she looked so tiny."
For four agonizing days, Tilly's parents and physcians waited for signs of improvement. Finally, the Lockeys got the news they were hoping for: Their daughter was getting better.
"Once I was able to hold her and read her a story, I just remember thinking, ‘I don't need anything in life other than this,'" Lockey says.
Although she was alive, the meningitis had devastated Tilly's tiny body. Parts of her skin had turned black and hardened, and doctors prepared the family for the fact that she would lose her hands, and eventually some toes as well. In addition to the physical devastation, Tilly became mute for about three weeks before she began laughing and smiling again.
"It was so great when we finally heard her laugh again; we knew that she was coming back to us."
Tilly was able to go home in February 2007 but returned in March to have her hands amputated at the wrists. The day before the surgery, the doctor talked to the family about how the surgery could be performed in a way that would make it easier to fit Tilly with a prosthetic solution. Tilly stayed in the hospital for a week and when she went home, she eventually lost the tips of her toes and toenails, as expected. Now at 13 years old, the effects of the meningitis continue to affect her. She has developed a spinal curvature, and one of her legs stopped growing and her knee will no longer bend on that leg.
Tilly's first prosthetic hands were provided through the UK's National Health System (NHS).
"I love the NHS and they kept our daughter alive, but when it came to what they could offer in prosthetics in 2008 and 2009, it wasn't very good at all," Lockey says. "It was like a tube with three prongs—two fingers and a thumb. It looked more like a weapon than a hand. She was scared of it, so we got rid of it."
After that, they began looking at options through private clinics. The first prosthesis Tilly was offered did look like a hand but wasn't functional.
"We weren't ashamed of her amputations; we weren't trying to hide the fact that she didn't have hands," Lockey says. "We just wanted something that could actually help her."
Finding a Fit
Tilly tried several other prosthetic devices over the coming years, which were expensive and didn't meet her needs. Lockey vowed to find a solution that would improve her daughter's life. Research led her to 3D-printing technology and Open Bionics, a prosthetics provider in Bristol, England. At the time, the company was looking for a child who had bilateral amputations.
"At this point, Tilly could do everything without hands, but she was also really invested in helping other kids," Lockey says. "She didn't want other kids being told there was nothing for them."
The Lockeys met with Open Bionics' founders Joel Gibbard and Samantha Payne in 2016, when Tilly was ten years old.
"They made an effort to get to know Tilly and understand what she wanted and needed out of a prosthesis," Lockey recalls. "She really wanted to be able to brush her hair. We weren't concerned with it looking real, we wanted it to be fun and futuristic—and functional."
Ultimately, they all agreed that Tilly's prostheses needed to be something she was proud to wear. At the time, the company was developing the first iterations of what would become the Hero Arm, the first 3D-printed, multi-grip prosthetic hand. In summer 2016, Open Bionics partnered with a videogame creator that developed a storyline with a character who uses a bionic hand. Tilly was invited to Comicon in San Diego to wear the prosthesis.
"At this point, Tilly wanted hands more than needed them, but she thought this would be a nice break from people feeling sorry for her and a chance to do something fun," Lockey says. "Instead of people walking away from her feeling depressed, the reaction was brilliant and different."
A Wonderful Surprise
Earlier this year, Tilly got the surprise of her life when Open Bionics partnered with filmmaker Twentieth Century Fox to surprise her with a new pair of Hero Arms at the London premiere of Alita: Battle Angel. The movie is about cyborgs that are given bionic limbs to fight a futuristic war.
Tilly was told she was needed for a photo shoot to advertise the Hero Arm. But when she arrived, she was taken to the movie premiere where filmmaker James Cameron and the Twentieth Century Fox team presented her with the new "bionic" arms and invited her to walk the red carpet with the celebrities.
"For the first time ever, the Hero Arm is available for people with upper-limb differences as young as eight," says Chris Edwards-Pritchard, digital lead for Open Bionics.
The Hero Arm weighs less than 2.2 lb. and has a breathable and adjustable socket. It can also be fitted with customized covers, a feature Tilly helped inspire.
Now, Tilly uses her Hero Arms every day. She has inspired and helped many people and she has also published a number of popular YouTube videos demonstrating how to do makeup with prosthetic hands.
"These are the first hands she's had that don't get hidden in a drawer," Lockey says. "The other day she was able to pull a suitcase and carry a hot chocolate at the same time. Small things that we take for granted she gets really excited about."
In April 2019, Open Bionics launched the Hero Arm in the United States in partnership with Hanger Clinic, Austin, Texas.
"It has been incredible watching Tilly soar in confidence," Edwards-Pritchard says of working with Tilly. "She's painted using her arms on live national TV, attended a fashion show at the White House, and even met the Dalai Lama in Amsterdam. She is a cyborg queen and we're super proud of her."
Tilly continues to work with Open Bionics engineers to help them perfect and customize the Hero Arm, and she regularly sends in videos with ideas for improvement.
"This is something we encourage from all Hero Arm users around the world," Edwards-Pritchard says. "As a bilateral amputee in particular, Tilly would like to see an automatic wrist for the Hero Arm so she can put her hair up. Our R&D team are exploring different options and we're excited to see the results."
Tara McMeekin is a writer and editor based in Parker, Colorado.