Uploaded September 2020 | Updated September 2026, 1 week ago

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"My name is Tilly Lockey. And this is my story.

One night in January 2007, my mam was woken by the sound of whimpers from the nursery. I was running a temperature but I was also at the age of teething, so my mam just gave me some Paracetamol Syrup and returned me to bed. But a couple of hours later, I whimpered again. When she picked me up, I got sick. She brought me to bed with my dad and her so they could watch me close. In the morning, my mam noticed my breathing was quite rapid and rang the doctors straight away.

In the waiting room, I sat on my mam’s knee, unable to lift my head off her chest. The doctor checked me over, looked in my ear and said “Ah, there’s the problem. It’s an ear infection. Just pop to the pharmacy, pick up some kids’ ibuprofen and she’ll be right as rain in 48 hours .” My mam was so relieved. We picked up the medicine, but I wouldn’t be better in 48 hours. I’d barely be alive.

My nanna was in the middle of changing my nappy when, underneath my clothes, she saw massive bruises. It gave her a shock! She had held me so tenderly and gently but now I looked beaten to a pulp. She called for my mam. When she saw the bruises herself, her head spun. This was clearly no ear infection, but what was it?! Normally she would do anything to protect her baby from injury, but how could she defend against something from inside of me?! She ran to the phone and rang for an ambulance.

We were met at the emergency room by ten medics. After they treated me, they sat my mam down and broke the news: I had a severe case of Meningococcal Septicemia Strain B, a bacterial infection of the brain and spinal cord . Then she said the words that no mother should ever hear:...I didn't have much time left. My mam looked at me with tears in her eyes, she felt like she was in a terrible dream. She started to be sick and apologized for it. The doctor told her it was a normal reaction. As if it wasn’t bad enough for my mam to hear the news, now she had to be the one to break it to my dad. “Tilly... She’s going not going to make it. But my dad just looked right back at her and said, “No, she won’t. It’s Tilly! She eats all her vegetables and is such a positive, happy little girl. She won't! She can't!”

For four days, my parents just sat next to my bed and prayed. The next morning, the medical specialists came in, looked at my mam, and smiled. He told everyone I was getting better! That my body had responded well to antibiotics and that I must have incredible strength because I was fighting it!. Everyone cried tears of happiness. My mam collapsed to the floor, relieved, exhausted, and grateful .“However…” he said, “the disease has really damaged her body. We won’t know to what extent until everything settles. …There need to be amputations .” Normally this news would be devastating, but at that point, he could have said anything to my parents. They were getting their baby back! Anything else they could deal with.

A few days later I was back in the hospital for the amputations. My parents discussed with the surgeon to amputate straight across the wrists rather than leave me with part of a hand or finger. How horrible to have to make those decisions!. The doctors gave us a minute alone. My mam just looked at me, heartbroken. I was so little yet had already lived through so much. She held me close and made a promise. She promised me I’d be okay. That one day she would give me, my hands back! The surgeons came back in It was time. They wheeled me away to surgery, leaving my mam and dad alone again, helpless

Hours passed. What was taking so long?! Was this normal?!. My mam wondered how I’d manage with no hands? How would I live independently? How would I make myself a cup of tea and hold a heavy kettle of boiling water?. My mam and dad’s eyes met, each of them wondering the biggest question that no one dare say out loud: Would it even matter? Would I even survive the surgery? They took each other’s hands and squeezed. Holding on to each other. Holding on to hope."

This video is based on a True Story. Tilly is 14 years now and lives in the United Kingdom. After a near-death battle for her life she promised herself to never look back and to use her optimism, strength and perseverance to instil hope in the lives of young children around the globe with disabilities or differences.

To Be Continued...

Follow's Tilly's Journey Here:

Instagram @tilly.lockey
YouTube tillylockey
Instagram @tainteduk.co.uk
YouTube tainteduk
Twitter taintedents

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