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Kaylie's story

22nd September 2019

Kaylie Knight from Chelmsford never felt like the same child again after contracting meningitis as a seven-year-old. Eighteen years on, she admits life has been tough – but has found love and is looking forward to starting a family of her own one day

Kaylie's story

“I remember the girl who I was when I was 7 years old. But the girl who woke up from the hospital bed was not that girl anymore.

I felt like my happy child life was taken away from me. I didn't understand what was going on, I didn't understand what happened to me and due to the fact I was so young, I didn't have the knowledge to understand.

“I had meningococcal septicaemia. As I grew up to understand the disease, I was told it was blood poisoning that affected me. It caused loss of digits on my left hand, muscle loss, foot drops on both feet, nerve problems, scarring, bone problems, and left me partially deaf and with memory loss.

“This changed my life completely and it has been a very difficult time - not only for me, but for my family and parents too. My dad had to look after my youngest sister who was 5 years old and to work his business to survive. My mum stayed in hospital with me for guidance. I had family members who came to visit me, such as friends, teachers from school and I remember being so poorly.

Dad and doctors saved my life

“I remember exactly how I caught meningococcal septicaemia.

“I was an ordinary child who couldn't sleep. One night I was in my bed and was wide awake, couldn't stop turning from side to side and I felt hot. I went downstairs to tell my dad that I couldn't sleep but my dad told me to try and go back to bed - which I did. A few minutes later, I went downstairs again and again told him I couldn't sleep.

“My dad got up and took me into the kitchen. He lifted me onto the kitchen counter and got me a glass of water. When he gave me the glass of water to drink, he noticed a rash all over my body. I couldn't look at the light either. Dad stayed calm and told me he was going to call the ambulance. I went into the living room to rest and I felt weak all over my body. I felt like heavy weights were on top of me.

“The ambulance came in a few minutes. I saw my dad running upstairs to get my little sister while the ambulance man lifted me to take me into the ambulance. I was on the bed and noticed wires going all over my body. I was so weak, and I was looking at my dad and sister who were watching me... All I wanted is to be in my dad's arms at the time.

“We arrived at A&E at St Mary's Hospital. I remember being rushed into a room and saw loads of doctors around me. I did not know what to expect. My mum appeared out of nowhere and kept crying... I wanted to know where my dad and sister was, until I tilted my head to the side and saw them standing behind a blue curtain. I saw doctors putting needles in me and taking blood out of me. I didn't feel anything. I felt my body go numb. One of the doctors tried to put an oxygen mask over me but then I kept feeling sick. Everything was going on for a few minutes and I felt like I went to sleep…

“The next thing I knew, I woke up in a hospital bed and a room... My dad saved my life due to knowing what the illness was. Luckily he knew what it was! I want to say thank you to my dad and the doctors for saving my life.

Life is a battlefield

“Growing up and suffering from this condition has been the toughest ride of my life and is still on-going. Once the disease has passed, your life is a battlefield.

“The condition I ended up with had consequences. My dad had to make decisions to agree with the doctors to go ahead with surgeries until I reached 18 years of age, when I was told I could make the decisions myself. Sometimes I looked at my dad not knowing to go ahead or not.

“As I been through so much, I continue to be strong and to get through the pain. All I wanted was to be like others in the world and not feel uncomfortable with myself; it's how I grew up. But I became a shy girl who felt different from others. I didn't know right from wrong or knowledge at the age I should, due to what has happened to me. I needed to learn everything again. I had to learn how to write, how to walk, how to eat, speak, qualifications, and life. I didn't go to an ordinary school. My dad put me into a special needs school to help my needs and learning.

“As I started to grow up, I wanted to be loved and for people to accept me for who I am. I tried so hard to have a life like others. I went to college, made friends, and felt the older I became, the easier it was. I had people my age who understood. Not everyone is going to understand my condition, but I felt like most people accepted me as I got older.

Found love

“Life is hard and like a circle. You never know what will come out of situations until you take the chance. Not everything is going to go the way you want it to go. I am 26 years old now. My experience at a young age taught me about life and knowing what makes me happy. I have seen people who has suffered like me and with even worse conditions but I look at people and I feel hope.

“Knowing what I have been through, I show people feelings. I show how much I care due to knowing the experience I have been through. Right now, I am happily working for my living and have a partner of my own. I never thought I would have someone to love me for who I am. I never thought I could find anyone who would accept me for who I am. Me and my partner have been together for nine years and I hope we will last for a very long time. He makes me feel like I am one of the luckiest girl to be alive. He calls me names such as "beautiful". Having someone who loves me and says that makes me feel like I DO belong in this world.

Looking ahead

“Life is still tough for me right now, as I can only manage and do certain things. I am only capable in certain situations but my main goal in life is to have a family of my own and to have a career. I do struggle with jobs as in the past I couldn't stay in full time and permanent due to needing to go back and forwards to hospital appointments. So I am still looking for a permanent job now and waiting for an employer to accept me for who I am.

“I had my last surgery in 2017 in May and now have a metal plate in my right leg to help me walk better. In the future, the doctors advised I will get other complications and things will get worse as time goes by. But they want to leave me alone and for me to try have a life without all the drama. I am hoping one day it will lead to the direction I want. I want to be able to guide my kids and give them love like my family did. I will need help in future due to my physical side, which will be hard. But my family and friends know I will be a good mum in the future.

“I want to make everyone aware how meningococcal septicaemia can affect someone. There are people who are out there and ten times worse than myself. I know life is hard and I know there are people who can never understand how hard it is. Physical, emotional and mentally. It will affect your whole life and somehow you will need to fight, be brave and always say to yourself, "you can do this".“