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Abi R's story

27th April 2021

Abi, originally from Jersey in the Channel Islands but now living in Norwich, will have the 20th anniversary of surviving meningitis and meningococcal septicaemia as a 4-year-old later this year

Abi R's story

She tells us here how her world absolutely opened up when she began to use a wheelchair in 2019.

""It’s just gastric flu,” the GP said, “Call again if she gets worse”.

“It wasn’t gastric flu. In the space of a few hours I had gone from a normal child being picked up from school, to unresponsive with a raging fever.

“My mum knew something wasn’t right; something in the back of her mind was ringing alarm bells.

Then, the rash started. Purple blotches were literally appearing all over my skin as mum watched.

“At the age of 4, I contracted bacterial meningitis and meningococcal septicaemia.

“When you live on a small island like Jersey, word gets around fast and exciting (or terrifying) things don’t happen very often. Someone had tipped off the local news about my story, and reporters were lining up outside of the ward doors and attempting to hassle the nurses into passing on information.

Returning to the real world was bizarre

“Returning to the real world was equally as bizarre. My mum says it was like she took one child into the hospital and bought another home with her.

“I was left with an Acquired Brain Injury (ironically, the acronym is also the spelling of my name!) and I had severe behavioural issues, as well as losing my memory. I was violent and filled with anger, I couldn’t understand social cues and had lost the knowledge of how to interact with others.

“My wonderful Reception teacher spent many days with me at school re-teaching me everything that I had lost when I lost my memory.

Growing up in pain

“Growing up, I was often in pain, mostly in my legs. As I grew, the pain grew with me. By the end of my time at school I was having to get a lift there and back, despite living very close by, because my legs just could not carry me alongside struggling up and down the stairs all day at school.

“With time the violent tendencies lessened, but to this day I still struggle socially with picking up on social cues, holding conversations and articulating myself. Migraines have also been a lasting after-effect.

“Mobility-wise, I finally began listening to my body in late 2018 and bought my first walking stick. At this point I was increasingly struggling to walk any distance, I was tripping and stumbling constantly and struggled with pain, exhaustion, and dizziness. I have since been diagnosed with Fibromyalgia, which is thought to have been bought on by the meningitis.

Finally enjoy the world

“I began to use a wheelchair in 2019 and my world absolutely opened up. I could finally enjoy the world outside my home without fear of injury, or having to spend the next week resting and recovering. After an infection destroyed part of my spine in October 2020, I now need to use a wheelchair nearly full time.

“Nowadays, I split my time between illustrating, cross-stitching, reading, writing and snuggling my cats Leo and Dotty. Blogging under the pen name Pixie Celeste, my mission is to normalise mobility aids. They’re not scary, and they don’t have to be boring! I love dressing up in fun, colourful outfits and accessorising my wheelchair. I’m proud of my wheels, and I want to help other young people to be proud of theirs too!

“At the time of writing, it will be my 20th “I Survived” anniversary in October. Time is a very precious gift that I have been incredibly lucky to receive, and I plan to make the absolute best of it!”