Sarah Lockey became a campaigner and fundraiser after her daughter, Tilly, caught meningococcal septicaemia, a deadly form of meningitis for which at the time there was no vaccination, and had to undergo an operation to have both her hands amputated. As well as doing everything that she can along with her family to make Tilly’s life as normal as possible, and making sure she has the same opportunities as any other child, Sarah also works to raise awareness about meningitis. Tilly has a robotic hand from Open Bionics, a UK-based start-up company that develops low-cost bionic hands, and she works with them to help raise awareness of the challenges for child amputees and improve the lives of others.
“…To make kids with limb differences feel like super heroes is such an amazing idea. They are superheroes, every single one of them. To make prosthetic practice into Jedi training is such an amazing, fun thing to do rather than fear your prosthetic appointments…”
Tilly was 15 months old when she contracted meningococcal septicaemia strain B. She was given 0% chance of survival yet she fought the disease and survived only losing hands and toe tips. We are so grateful and very lucky that she is still alive.
Tilly was the first child at the age of three to receive a Myoelectric hand. This was a breakthrough in technology at the time but we did come to realise how limited and expensive prosthetic hands were children.
Prosthetic hands are very complex things but have always been so expensive to buy. The first pair we fundraised for were £26,464 a pair! (Bearing in mind this was for a three-year-old and children grow!) We were told that maybe Tilly would need two pairs a year.
That is extreme pressure to put onto families that want to go down the route of prosthetics, especially when they have been through so much trauma already and now the pressure of this financial need to provide prosthetics.
Tilly and I have dedicated our life to working with prosthetic companies, fundraising and raising awareness of meningitis septicaemia. We want to live in a world free of meningitis and for those people effected we want to have the right type of assistive devices for them. We made it our ambition to help prosthetic companies develop prosthetic hands for children.
Changing the world of prosthetics forever
I found Open Bionics by searching for companies that we could speak to about development of children’s prosthetics. I felt like I had won the lottery because they were putting out a call to try and find upper limb children amputees to help with a new 3D printed bionic limb that they were developing.
I jumped at the chance and emailed them straight back with a bit of information about Tilly and I, and a photograph of Tilly. We said that we would love to help with their bionic hand. They were already involved with the makers of the Deus Ex video game and they wanted to make a child’s version of the main character’s (Adam Jensen’s) bionic hand.
They sent us a video of what they were starting to make for kids and we were blown away. I don’t think we have ever been so excited. Everything they were doing was just what we had always wanted to achieve. These limbs were the future and they wanted to make them now. They were going to change the world of prosthetics for children forever and it was so exciting!
How video games can become a reality and help people who need it
When Tilly first got involved with Open Bionics it was to model their kid’s version of Adam Jenson’s Deus Ex arm, so we went to San Diego Comic Con to showcase this and talk about how video games can become a reality and actually help people who need it. It was amazing experience and we have become great fans of their work and hopefully friends too.
You never know, Tilly says that maybe in the future Adam Jenson should get a little sister or side kick or something!
Becoming an Open Bionics ambassador
There has been lots going on with Tilly since our last Womanthology article back in 2016. There are a few things that we can’t talk about yet that will be coming out early 2018. Open Bionics asked Tilly to become one of their ambassadors, of which we are extremely proud. Tilly has been privately trialing a bionic hand for them that they are hoping to make available more widely, ideally on the NHS.
Tilly has been using this hand at home for months now and has really been running it through loads of tests and rigorously critiquing it too. Open Bionics is really happy to get totally truthful opinions of what is good and bad so that they can develop the very best bionic hand possible. This is Tilly’s job.
Tilly lost both of her arms as a baby, but here she is painting with her sisters. Our cutting-edge bionic arms turn disability into possibility. (@GiveTillyaHand) https://t.co/Ic6S9KGMQD #BionicGirl #Tech #Innovation #Prosthetics pic.twitter.com/gaZuTLDnw0
— Open Bionics (@openbionics) December 7, 2017
Tilly has also just started secondary school and has settled in amazingly well. She has got some really fantastic friends, old and new, so I couldn’t be happier with her transition from primary to secondary.
The future of prosthetics – affordable and available to all
Open Bionics is such an amazing company. Any worries, ideas or support needed they are only a tweet, message or phone call away. They really are a company that cares about making what their client needs not to make themselves money. Just for the good! That is why they are trying to make these devices really affordable.
They look so expensive but so much more affordable than what has been out there for so long. Open Bionics is the future for prosthetics and we are so grateful and so proud to be part of that journey with them.
It has been so important to make prosthetics more affordable for families, but not just that. They have needed to be better at griping things, picking things up etc. We are really hoping our work with Open Bionics help with these types of hands become available for ALL kids that need them on the NHS. That’s our dream.
— Tilly Lockey (@GiveTillyaHand) January 10, 2017
Making kids feel like superheroes
To make kids with limb differences feel like superheroes is such an amazing idea. They are super heroes, every single one of them. To make prosthetic practice into Jedi training is such an amazing, fun thing to do rather than fear your prosthetic appointments. Their work goes further than just super heroes though and that’s what Tilly continues to help them with now.
Those kids will eventually become teenagers. This is the hardest time to be missing limbs when hormones and vanity etc. kick in. Tilly wants to try and make these bionic hands really super cool – fashionable and something you are extremely proud to wear!
A very intelligent little girl who knows her own mind
Tilly is a very intelligent little girl who knows her own mind and I always think: “Wow! What does the future hold for her?” She is very creative. She loves to design and draw. She has mentioned a couple of things lately…
Obviously, top of the list is to continue helping Open Bionics develop bionic hands but she also has an interest in becoming an architect, having her own fashion label and running her own boutique selling her own clothes, or just being in front of the camera, hopefully changing the world for the better somehow!
She would also always continue to raise awareness about meningitis as long as it’s always destroying lives. Tilly wants to help all kids that need support or would like the kind of bionic hands that she is getting to get them too. We are always very grateful in any support given to help Tilly with this process. She is always looking for companies or individuals to help sponsor her hands so that she can continue to promote what they are doing too.