Overcoming Odds: Inspiring Triumph of a Disabled Girl's Journey
Survivor, fundraiser, social media star, singer, inspirational speaker, superhero – these are the many faces of Tilly Lockey as she celebrates her Sweet 16. The ‘bionic teen’ is marking the milestone birthday on Saturday night with a glitzy party at the Baltic Riverside in Gateshead. It’s an occasion her parents thought they might never see when, in 2007, they were told to prepare for the worst as Tilly was diagnosed with meningitis. Tilly, from Consett, County Durham, battled against the illness and returned home after four weeks in hospital and 10 blood transfusions. But the disease damaged her hands and toes so badly they had to be amputated. These days, Tilly Lockey is one of the youngest North East entrepreneurs, a global ambassador for Bristol based ‘Open Bionics’ (who manufacture her 3d printed lower limb prosthesis the ‘HeroArm’) and travels the world as an inspirational speaker.
She is also a presenter on SKY TV’s kids news programme FYI: For Your Info as well as a model, influencer, makeup blogger, actor and singer. Tilly recently won the CBBC singing TV programme ‘Got What It Takes’ and will perform on one of the main stages at next year’s BBC Radio1 Big Weekend. Here is her incredible story, as told by ChronicleLive since her diagnosis at 15 months old.
March 2007
Cheeky Tilly Lockey is full of grins after beating meningitis. The 17-month-old spent four weeks in Newcastle General Hospital where she had 10 blood transfusions. But the little smiler pulled through and is now recovering at home with parents Sarah, 28, and Adam, 27. They were told she had little chance of survival after catching secondary septicaemia. From their home in Consett, Sarah said: “We have been told she will probably lose her hands and toes, but compared to losing our baby, that is nothing.
“It is just amazing to have her back home smiling and playing. We were told she probably wouldn’t survive because she was so ill so to have her back home is a miracle.” In the middle of January Sarah took Tilly to her GP because she was tired, sick and had a high temperature. After being sent home with antibiotics for an ear infection her condition worsened. And within a day Sarah spotted red marks on her body and knew what was wrong. She called an ambulance and Tilly was taken to Durham City’s Dryburn Hospital where within minutes of arriving she was surrounded by more than 25 doctors as her parents’ worst nightmare came true.
It was confirmed she had group B meningococcal septicaemia, for which there is no vaccination.
Sarah said: “When I heard meningitis I projectile vomited in the hospital room, I was hysterical. You never think it can happen to your own kid. “Everything was like a dream, a nightmare I couldn’t wake up from, I kept thinking ‘this can’t be real’. You never think it can happen to your own child. Life just has to stop, if you think your baby is going to die, life stops.” Sarah and Adam, a maths teacher, then had to follow their daughter to Newcastle General Hospital’s paediatric intensive care unit.
After arriving, Tilly’s conditioned worsened as she became more and more affected by the virus. Her whole body came out in red bruise-like spots and she slipped in an out of consciousness. She was hooked up to a ventilator and pumped full of powerful medication and pain killers, and Sarah and Adam were told Tilly’s chances of survival were slim. They were told if her condition did not improve within four days, they must expect the worse. On top of the meningitis, Tilly also caught another form of septicaemia which could have been fatal had it not been picked up quickly. But against all the odds, Tilly’s condition improved and after four days her parents began to see signs of the little girl they knew and loved. After a week she was moved to the children’s ward and her mum and dad were told the worst was over.
April 2007
Back home and beaming, meningitis sufferer Tilly Lockey is recovering after losing her hands to the disease. The 17-month-old amazed doctors by surviving the virus in January after spending four weeks in Newcastle General Hospital. Now Tilly has been back in hospital and surgeons have had to amputate both hands at the wrist because of the dead skin and tissue. But mum Sarah, 28, and dad Adam, 27, are just pleased to have their little girl back home in Consett and back to her old self.
Speaking to the Chronicle after the operation, Sarah said: “Since she has come home it seems like we have got the old Tilly back. “She perked up straight away. We think she must have been in a lot of pain with the dead hands. Thankfully she has got her big personality back and is more like she was before. “She is just a different child, smiling all the time and eating everything in sight, just like she used to. “Her feet are still causing her a few problems but she is slowly beginning to put weight on them, it will just take time.” Doctors hoped to save some of her hands but after removing the blackened skin and bandages it was decided amputation was the only option.
Sarah said: “We know it’s going to be hard for Tilly with no hands but we are a strong family and will pull together and give her the best life she can possibly have.” Sarah and Adam raised a massive £10,000 at a charity night near their home earlier this month, all in aid of the Meningitis Research Foundation. They are now hoping to start fundraising so they can save up enough money to buy Tilly prosthetic hands when she is older.
July 2007
She cheated death, but now the system is cheating her. Brave meningitis survivor Tilly Lockey lost both her hands and toes to the ravages of the potentially deadly bug. But to add to her troubles, she faces a bleak few years without the best prosthetic hands because of NHS rules. And so today the Chronicle urges you to dig deep to help. We want to raise £20,000 for a pair of specially-fitted hands in our Give Tilly A Hand appeal. And the Chronicle is starting off the fundraising with £5,000 to get the ball rolling.
Fabulous Chronicle readers have raised the money needed to buy Tilly Lockey new hands in less than 48 hours. We started the Give Tilly A Hand Appeal on Thursday to raise £20,000 to buy the 21-month-old prosthetic hands. And donations have poured in from millionaires, pensioners, parents and business chiefs alike helping us to top the £20,000 target already.
Two weeks ago we launched our Give Tilly A Hand appeal and, with the help of kindhearted readers, have so far raised a staggering £30,000.
December 2007
Little meningitis survivor Tilly Lockey has taken her first unsteady steps. Tilly had both hands amputated at the wrist and lost all her toes during her battle to survive the killer bug a year ago. She had just been starting to walk at 15 months when her progress was halted. But today two-year-old Tilly’s proud parents Sarah and Adam, of Consett, County Durham, are over the moon watching the amazing progress of the daughter they so nearly lost.
Sarah 28, said: “She has managed eight steps. She does lack confidence because she’s got no toes to help her balance, and when she falls she can’t reach out and grab onto something.”
January 2009
Tilly Lockey can finally hold hands with her mummy. She lost both hands and her toes when her body was ravaged by the potentially deadly bug meningitis when she was just 17 months. Ever since, her family have been determined to provide Tilly with the best prosthetic limbs available. And the dream moment has been made possible thanks to you. Floods of cash donations have poured in from Chronicle readers ever since we told of her plight and launched the Give Tilly A Hand Appeal.
Now the three-year-old will be able to start living the life other little girls take for granted as she starts to wear a pair of myo-electric hands. Devoted mum Sarah, 29, said: “The other day we went to the sweet shop and she had both her hands on. It was the most emotional point for me.
“I think it will one of the biggest memories I will ever keep. She held my hand for the first time in two years and I could feel her little fingers squeezing tight around mine. I will never forget that.”
September 2009
Famous faces – and hands – joined together to help raise money for little meningitis victim Tilly Lockey. More than £40,000 was raised at the charity night at Gateshead’s Hilton Hotel on Saturday, which saw over 100 celebrity hand prints auctioned to raise money for three-year-old, who lost both her hands to meningitis at the age of 15 months. Among those who showed up at the Celebrity Hand Auction were TV star Denise Welch, business tycoon Duncan Bannatyne, Emmerdale’s Charlie Hardwick and Vicky Hawkins, and Waterloo Road’s Chris Greere.
More than 100 prints and hand casts, including those of Sir Bobby Robson, pop group Girls Aloud, and actors Tom Hanks and Whoopi Goldberg, were auctioned off. JK Rowling’s and Girls Aloud’s prints went for a whopping £6,000 each, while the print of the late Sir Bobby Robson fetched in £4,000. The event was organised by Tilly’s parents Sarah and Adam, who have worked tirelessly to raise money for their daughter, so she can live as normal a life as possible.
April 2010
Tilly Lockey is getting to grips with her new hands. The lovable four-and-a-half-year-old has just been fitted with a new pair of prosthetic limbs. Tilly, who had to have her hands amputated after contracting meningitis, received her second pair of false limbs just days ago.
And according to proud mum Sarah, the hi-tech limbs are giving the County Durham youngster a new lease of life. Despite only having the devices for less than a week Sarah says her daughter is already more proficient using them than her old pair. Sarah, 31, said: “She understands how to use them now.
“It took a while for her to learn how to do it with her first pair. “She has been at nursery this week and she has been drawing pictures and painting with them. “It’s clear that she is more comfortable with them. “I think they are a better fit and she has more control than with the other pair.” The artificial limbs, which cost £23,000 per pair, work by using sensors attached to Tilly’s arm stumps to drive motors in the hands.
Tilly Lockey celebrated her latest milestone – starting her first day at school.
Yesterday she followed in her mother Sarah’s footsteps into the classrooms of St Mary’s Primary School in Blackhill, Consett. Mum-of-three Sarah said she would miss Tilly being around the house but was excited to see her take on her next challenge. “It’s a huge deal for us, and this big milestone is quite overwhelming. It’s great to see her grow up so well and happy. She is such a big inspiration. She never lets her disability get in her way,” Sarah said. “She is used to young children commenting and asking her about her hands. As soon as she sat down in school, one little girl just said ‘You have no hands.’ “She just tells them she had naughty blood when she was a baby, but it’s okay now.”
November 2016
A young “superhero” amputee has showcased the next generation of comic book-inspired bionic hands. Tilly Lockey, 11, lost both hands after developing Group B meningococcal septicaemia in 2007. The schoolgirl has travelled the world ever since, raising awareness of the complications that can follow meningitis, and fundraising for her own prosthetic hands – which can cost up to £20,000 a set. Now Tilly has trialled the state-of-the-art robotic hands she helped develop with some of the world’s top scientists.
The little star appeared on stage at the Wired Next Generation event in London to showcase the limbs, designed with a child in mind and inspired by the worlds of Frozen, Star Wars and Iron Man. Created by Open Bionics, the revolutionary hands are made using 3D printing technology sent out to people in the post, which makes the products quicker to design and keeps the cost for the amputee low. Proud mum Sarah Lockey, 37, said: “It was a really inspirational day for her. “We got involved with Open Bionics when we found out they were looking for volunteers to help them with designs.
“There never seemed to be an awful lot out there for kids in terms of prosthetic limbs and we were always looking for something better for Tilly. “These designs are perfect because they’re inspired by comic books and they’re going to be kept really fun and cool, for children that want something a bit different. “The idea is that instead of people talking about the disability and feeling sorry for them losing their hand, they’ll focus on how cool it is. “Tilly loves the design. It’s 3D printed so it’s lighter than what she’s had in the past, she can move more of the fingers. “Previous hands would just open and close but with this she’s been able to pick up a ball.
“She loves her superhero characters and she wants the design for hers to be something that looks futuristic and sci-fi. “She’s not a girly girl at all, she wants something completely different.”
September 2019
A meningitis survivor was surprised with a pair of brand new bionic hands ahead of a Hollywood blockbuster’s film premier. Tilly Lockey, 13, was surprised with a new pair of hands at the Dorchester Hotel before the premier of Alita: Battle Angel – a cyberpunk action film where cyborgs are given bionic limbs. Tilly proudly showed them off when she was standing beside the film’s star Rosa Salazar. Her mum, Sarah, who works as a community fundraiser for charity Meningitis Now, said her daughter was gobsmacked. “She was in one room and the film crew were waiting secretly next door,” Sarah said. “She had come down to London thinking she was just coming for a photoshoot – so it was a complete surprise when the film crew came in and presented her with her new arms, telling her she was a real-life Alita.”
November 2020
Kind-hearted ‘bionic teen’ Tilly Lockey has vowed to help another woman raise funds for a robotic arm.
The 15-year-old now has two hi-tech bionic arms, known as a Hero Arm, that she helped develop and uses her large social media following to promote body positivity and self-love. Now Tilly, who is helping a woman who had her left hand amputated due to domestic violence at the age of seven raise funds for a bionic arm like hers. Suaranjit Singh, who was born in Malaysia before moving to London, filmed an emotional video sharing her story about her struggles growing up. Tilly, who is a presenter on Sky’s ‘FYI: For Your Information’, said: “I have been so lucky and loved in life by my family, friends and my local community have always supported me. “I was given the chance to really have a great life and for that I am forever grateful. “As I am getting older I realise that not everyone is as lucky as me.
“I watched a video of a lady called Suaranjit who had lost her hand as a child due to domestic violence and it was quite an emotional watch. “When I found out that she would really struggle to crowdfund because she has nobody to ask to help her I just couldn’t sit back and not help.”