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 recently received a robotic hand to try and was invited, along with Sarah, to go to Comic-Con in San Diego to share her experiences.
“…At the moment Tilly is happy working alongside Open Bionics on a child’s bionic hand inspired by the Deus Ex Playstation game, and she is loving everything about the experience. I think this opportunity came at the right time for Tilly as she had just started to lose a little bit of her confidence and this has brought it back…”
Tilly contracted meningococcal septicaemia strain B when she was 15 months old. Up to this point Tilly was a very healthy baby girl and in a matter of hours we were told that it was more than likely she was going to die.
It all started in the middle of the night when she started whimpering in her cot. She had a slight high temperature and I put it down to teething and gave her some medicine. Tilly went back to sleep but started whimpering again about half an hour later. This time Tilly was sick so I changed her and I brought her into bed with me so that I could keep a closer eye on her.
As my husband was getting ready for work the following morning I noticed that Tilly’s breathing was very erratic. I brought her downstairs with me and phoned the doctors straight away to which they told me to bring her straight down. I woke up my eldest daughter and we went to the doctor’s surgery to be told that Tilly had an ear infection and just to give her some ibuprofen for children. At this point Tilly could not lift her head off my chest, she was a very poorly little girl. The doctor could see this but I trusted his judgement.
We went to my parents’ house so that I had support looking after Tilly while I took my other little girl to nursery and it wasn’t until we were changing Tilly’s nappy we noticed some very scary looking dark bruise like marks all over her nappy area. I was terrified. I have never been that scared in all my life. I knew at that point something was horrendously wrong.
Every parent’s worst fear
We grabbed a tumbler glass from my mam’s draining board and pressed it against her skin. The marks did not disappear and instantly meningitis came into my head.
I ran to the telephone and called an ambulance mentioning all the symptoms of rapid breathing, high temperature, not interested in anything and not wanting to be picked up and especially the marks on her skin and that a doctor earlier in the day had diagnosed her with an ear infection. I told them that I thought it was meningitis.
I remember turning around to look at Tilly. All of a sudden her skin started to look mottled with a greyish / blueish tinge. She started to be sick and I grabbed a hold of her and ran out of the door to meet the ambulance. They were ready for her and they agreed that it looked like meningitis and they gave her a shot of penicillin straight away. Thank God they did that – otherwise I don’t think Tilly would have made it to the hospital.
They strapped her up to the monitors at the back of the ambulance and her vital statistics were off the scale. She was drifting in and out of consciousness and I felt so helpless. I never ever want to feel that helpless ever again and to this day it keeps me motivated to help people as much as I can.
We arrived at the University Hospital of Durham and they were ready for us. The ambulance doors swung open and Tilly was grabbed from my arms and they ran with her into A and E. There were a lot of nurses and doctors buzzing around her taking samples and cutting off her clothes. A consultant sat me down and told me that they thought my fears were correct, that it was meningitis septicaemia and that it was likely she would die. I started to be sick.
My husband (Adam) arrived at the hospital from work after receiving a voicemail that made absolutely no sense from me. He was my rock through it all and never lost faith, that our little Tilly, the absolute ray of sunshine in our life would lose this fight.
Keep fighting and never give up
Meningitis septicaemia strain B was diagnosed – an apparently rare illness, which at the time was no vaccination for. Tilly was to be transferred straight to Newcastle General Hospital where they have a Paediatric Intensive Care Unit. They told us to come and say our goodbyes to Tilly because they had to close down her body and allow it to rest – it was just the machinery keeping her alive. They didn’t expect her to survive it. We went in to see her but we didn’t say goodbye we told her that she had to fight it and listen to our voices.
Tilly was given a blood transfusion in the ambulance on the way to the hospital. We were not allowed to be with her or follow the ambulance. We were told to go home and pack because if she did survive this ordeal, we would be in hospital for a long time.
I remember going home thinking about life without Tilly and walking into her nursery sobbing uncontrollably. I picked up her first ever teddy that we bought for her the day she was born and packed a bag full of clothes including her coming home outfit. I was naively packing her a pair of jeans not knowing the horrendous state her body might be in if she survived. But it was at least a coming home outfit I was determined that I wasn’t coming home without her.
Hoping for a miracle
We arrived at the Newcastle General Hospital and sat in the parents’ room for what seemed like ages not knowing if she had survived the journey. I read leaflets on meningitis getting some comfort from the words that read: “Nine out of ten children survive with no further complication.”
The door opened and the nurse came in and asked us if we would like to see our daughter. I was so grateful and relieved that she had made it this far I approached her bed. She looked so tiny in the standard single bed, but what we saw hardly looked like Tilly anymore. All of the bruising was all over her face and neck, her body was swollen and her hands had already started to turn black and claw over. We got such a fright.
Norman, her nurse, was standing by her side and I made him promise me that he would really take care of her and help bring her back to us. I mentioned the information that I had learned from the leaflet that nine out of ten kids get through this. Norman said: “Yes. However, Tilly is at the sicker end of that scale.” The longer Tilly was stable, the better. She will either get better slowly or decline very quickly. We stayed by her side praying.
On the fourth day Dr Choudry did his rounds and I was shaking. He is an amazing doctor but I was so scared to hear what he had to say. He could tell us the best or the worst news.
Against all the odds
He got to Tilly’s bed and looked at my scared face and smiled at me. I burst into tears and he said: “She’s doing it. She’s doing it against all the odds she fighting meningitis. She’s getting better.” I collapsed in a heap and all of the nurses who had been looking after her every day shed a tear also. “However,” he said and pulled back the blanket off her devastated body, “the disease has really damaged Tilly and we won’t know the extent of the damage until it settles.”
Tilly’s little body was covered in black patches of the septicaemia. Her hands and toes were already hard and dead. She had massive deep sores and ulcers all over her skin. My baby looked in so much pain. Tilly had shown so much strength already fighting for her life now it was my turn to be strong for her – whatever it would take to keep her alive we would make sure she would live the most fulfilled life she could. It was then that they decide that they would have to amputate.
The day came when I got to hold my baby again and I could have sat in that chair and not moved for the rest of my life. I was so content. I remember feeling so grateful and thanking God for all of his help. I never felt the need to pray so much before but I needed to and I felt that he helped me.
Tilly was transferred into a different ward for recovery and a lot of her care was left to me and my husband. We felt such a difference transitioning from having amazing qualified doctors and nurses by Tilly 24 hours a day to having to take a lot of the responsibility ourselves.
Blood donors: Giving the gift of life
Tilly had nine blood transfusions to help her survive. (Thank you so much to each and every person that gives blood – you might not realise it, but your donation can literally be the gift of life.) At this point we found out she needed another blood transfusion as she had contracted a secondary infection. We had thought we were through the worst in recovery, so to be hit by that was very scary.
Ever the fighter, Tilly did it though – she pulled through it and the next thing we had to concentrate on was getting her to eat something and hear her voice again. Since she had contracted meningitis she had been completely mute and no facial expression. We were told it was probably because she had been in so much shock.
We tried all sorts – reading funny stories, watching DVDs, playing music etc., but the moment came when I was playing with a helium balloon and I battered it hard towards Adam and he shouted out a playful “Ow!” and she giggled! We couldn’t believe it. Adam then punched the balloon back at me and I shouted out an “Ow!” and she giggled again, a little bit harder this time.
Typical Tilly – her giggles were music to our ears. Soon after, we discovered also that she would eat if her big sister fed her, so by accomplishing both tasks we were free to go home.
While we were at home and and waiting for the appointment to go back in and get her hands amputated we threw ourselves into doing a fundraiser for Meningitis Research. We held an auction at our local pub and lots of local businesses got involved and we managed to raise £10k for the charity and a lot of meningitis awareness.
My promise to Tilly
Tilly’s toes were dropping off one by one naturally, and, as you might imagine, that was an incredibly hard thing to deal with. At this point we got the appointment to go in for the amputations. The night before Tilly went into hospital I sat her on my knee and held her close and I made her a promise. I promised her that I would do everything that I could to give her her hands back, and to this day I continue to keep that promise.
People from the Meningitis Research charity night had said to me: “It’s great that you are fundraising for meningitis, but what are you going to do for Tilly? She will have a lot of needs in the future,” and the Give Tilly a Hand Appeal was born.
Life after meningitis
Our lives have been changed dramatically. We are a lot more nervous at any of the kids getting poorly – always worrying that it might be a lot more than it actually is.
I threw myself into fundraising for Tilly and meningitis, and raising as much awareness as possible. Tilly survived and I think she survived for a reason and I feel like it is my job to make sure that as many people as possible knows about the symptoms and effects of meningitis. I was always quite a shy person, but I’ve now found the courage to speak out in public on radio, TV and at events to raise as much awareness as possible.
There was always the worry of starting to buy Tilly prosthetic hands and have the pressure to have the funds for the next pair as she grows. We live around hospital appointments and prosthetic research, always wanting to keep Tilly at the forefront of technology and opening her life up to as many opportunities as possible, as well as trying to give all of our kids just a normal, happy family childhood.
Tilly likes to be in media and she likes to help with the prosthetic companies. It makes her feel like she is doing something to help. This happening to Tilly has made me think so much about the future, not just for Tilly, but for all of my children, but obviously with what Tilly will need and trying to stay ahead of the game so that she never feels disabled.
Physical impacts on Tilly
We are waiting to hear from her consultant about her legs. Since Tilly contracted meningitis we were told that we wouldn’t see the full extent of the damage until she started to grow and go to school etc. Thank God the meningitis doesn’t seem to have affected Tilly’s brain. She is above and beyond intelligent for her age, but the meningitis continues to damage her physically.
When Tilly’s baby teeth dropped out and her adult teeth started to develop, they grew already decayed, so Tilly has to attend numerous dental appointments to keep them capped. Sometimes the caps can come off and she gets really self-conscious, especially when it happens at school.
Tilly has always experienced problems with her walking because of having no toes. She has one leg much shorter than the other, so she needs to wear a built up shoe with insoles as it was causing her spine to curve. We are in talks with the consultant to lengthen Tilly’s leg as it has stopped growing all together now. She cannot walk distances and her ankles are also slightly twisted so they will need to be corrected once her leg has been lengthened.
It is very rare for Tilly to complain. She has pain every day in her legs but she says it’s a way of life for her. I cannot wait until all of the procedures are over to correct Tilly’s legs and ankles, so we see her out of pain and walking correctly.
Raising awareness about meningitis
We are acting as ambassadors for both Meningitis Help and The Meningitis Research Foundation by helping them with awareness raising about meningitis. We campaigned alongside them to get the meningitis B jab introduced onto the baby routine injections. That was always one of our achievements that we needed to succeed in and we did.
With regards to the Give Tilly a Hand Appeal, we have had so much support from everyone – friends and family, local business, businesses around the country have all donated either something to auction, a raffle prize or their time.
The main idea for the Give Tilly a Hand Appeal was to ask celebrities to draw around their hand and sign it and we would mount and frame it with a picture of them that they would send back with the hand print. We had a company called Photography for Little People who really supported us for our first charity ball. They took celebrity hand casts and created the most beautiful displays for us to auction.
Jonathan Ross was also a huge help in the beginning and would invite us down to the studio and allow us to go down and take some casts of the celebrities’ hands that he had going on his show. Denise Welch became our patron and attended our first ball and supported us so much with the fundraising and hand prints as at the time she would grab guests from the show Loose Women to support Tilly. Support like that is priceless.
We have had so much celebrity support it is hard to say who wasn’t involved in doing it. However, it became harder and harder to fund raise because I feel like we were asking for help from the same people all the time to come along to events so we have let it relax for a while. It would be great if we could pick it back up again, but it’s a lot of work to do on my own.
We couldn’t have set up The Give Tilly a Hand Appeal without the support of Meningitis Help, and especially our case adviser, Tony Neve. Without them we couldn’t fundraise for Tilly. They are an amazing charity that help children up and down the country that have suffered from meningitis, offering them support and advice and a way to fundraise. They have done so much for our family and others. It would be great if your readers could get behind them.
Equipment Tilly needs
When people ask what equipment Tilly needs, I answer, “bionic hands that do everything!” That would be the dream. As Tilly is growing up I am starting to see all the things that she may struggle with if she was to live independently. With being a double amputee I guess she needs help with anything you use your hands for.
She has adapted very well but I could see the kitchen being the biggest stumbling block for Tilly – preparing and cooking food. The bathroom also presents practical challenges. I’m going to get her some automatic dispensers for shampoo and conditioner and toothpaste. We already have one for hand wash so they should be around.
I would also like to find a way for Tilly to brush her own hair. She has very high maintenance hair. It’s beautiful, but takes a lot of work. She wouldn’t want to cut it too much to make it manageable, though – she loves her golden locks and so do we.
Being fitted with a bionic arm by Open Bionics
The Open Bionics connection came about when we saw an online request for children who had upper limb amputations to volunteer to help with 3D printing prosthetics. We had never tried 3D printing prosthetics before and I always wanted to keep Tilly really up there when it came to trying out the best hands. I also thought it was time to get Tilly involved again – she had just started to lack in a bit of confidence not wanting to show her arms out in public and wanting to cover up the scarring on her legs so I was hoping this might help her.
I hadn’t realised that Tilly had been chosen from hundreds of applicants and we are so grateful that she was. We were shown a video link of what Open Bionics and Deus Ex wanted to develop and showcase at San Diego Comic-Con and we were blown away. It got us really excited about prosthetics again. It all seemed totally what Tilly would choose to be involved in. She loves heroes and super powers, as well as gaming and fashion, so it just seemed like all of this rolled into one.
Open Bionics sent us a 3D scanner in the post, so we took a 3D scan of one of Tilly’s arms and emailed it back to them. We travelled down to Bristol and met the Open Bionics team and instantly felt comfortable with them. They were all so enthusiastic and excited to really push prosthetics to the limit – if there even is a limit with Open Bionics. Their enthusiasm knows no bounds and they are constantly going beyond the boundaries of what everybody had thought possible.
Tilly was helping with research on what amputees need and was fitted with the socket that had been created from the 3D scan we emailed and sensors were attached to her arm to work out the sensitivity of Tilly’s muscle movements. They were making an ‘Adam Jenson’ bionic arm for a child and this is what Tilly would wear in San Diego.
Tilly is happy working alongside Open Bionics and she is loving everything about the experience. I think this opportunity came at the right time for Tilly as she had just started to lose a little bit of her confidence and this has brought it back.
— Open Bionics (@openbionics) August 18, 2016
There were photos taken of Tilly walking around Open Bionics playing with her new bionic arm for the first time and just having fun with it. It was amazing how easily she could use it just after a few minutes.
— Open Bionics (@openbionics) July 29, 2016
— Open Bionics (@openbionics) July 21, 2016
There were also images released of her wearing her arm at Comic-Con in San Diego. She loves being able to use the fingers to make different gestures like thumbs up and the ‘OK’ sign, as she has never been able to do these things before. She’s even got her own signature pose when she looks through the ‘OK’ sign – people have been calling this ‘The Tilly pose’. It’s really cool for her and amazing to see her have fun and be excited about a prosthetic.
Tilly loved being involved in Comic-Con. She is very professional and works alongside adults very easily. It didn’t faze her that she had to sit on a panel for an hour in front of an audience and talk about the project. I couldn’t be more proud.
— Sammy Payne (@SighSam) July 23, 2016
Coming up next for Tilly
We are still working with Open Bionics and developing children’s bionic hands. We are at conferences in Amsterdam and London over the coming months as well as waiting for surgery to happen on Tilly’s legs.
We just want to continue to help change the world of prosthetics and support Open Bionics as much as we can. Tilly’s dream is to make prosthetics a high fashion piece – something that amputees can be proud to wear.
She already has done a lot of modelling but she would love to take it to the next level and model bionic hands as a fashion accessory and not just a necessary piece of equipment. Tilly would love to be there to show other children who have a disability that there is a better future for them and that they can do it too. Maybe one day Tilly can draw around her bionic hand to support another child fundraising for bionic limbs.