Ashley S's story

3rd May 2018

New Meningitis Now recruit Ashley recounts his own personal experience with meningitis

Ashley S

"My meningitis journey began at the age of four, so the full story doesn’t freshly come to mind. But as the years have passed, conversations with my Mum (who remembers every tear, every setback, every despairing conversation) have helped fill the gaps and build a fuller picture of what happened."

"So this has mostly come from her, and together we are telling it to you for one simple reason: back in ’93 we both fought and won our respective battles as a meningitis patient and as the mother of a patient, and we long to see everyone placed into these roles do the same, and part of seeing that happen is raising as much awareness as we can. If this piece only helps one individual it was worth sharing, as not everyone wins their battles & we want to see that change." 

"I was four years of age. I’d picked up some kind of bug, and it had completely wiped me out for a few days. Like nothing out of the ordinary for a child my age – a tired body, earache, feeling sick etc. But on day three the situation deteriorated - my temperature shot up to 105, I began to hallucinate & constantly felt like I was falling, and literally didn’t have the energy to move any part of my body. The Doctor on more than one occasion assured my Mum via the phone that it was just a bug & it would pass, but she insisted he make a home visit to come out and see me. He eventually agreed to do so, and within seconds of being in the house said ‘he needs to be taken to hospital right now’."

"I was rushed to North Devon District Hospital (carried in as I couldn’t move), where they tried with great difficulty to get my temperature to drop. I had neck pain which hurt so bad I had to be held carefully in position as they x-rayed me for any abnormalities. I cried uncontrollably throughout and every time my Mum came to comfort me I failed to recognise who she was and continued to cry out for my Mum. She repeatedly asked the doctors for reassurances I’d be okay, and was met with the answer ‘your son really is very poorly, it’s not looking good’."

"Before long, a diagnosis of bacterial meningitis was made. I was put on intravenous painkillers & strong antibiotics, and my temperature was carefully monitored hourly as it was still failing to drop – in fact, every time the doctors tried to take blood it was drying on the needle. Mum stayed with me the whole time as the incredible doctors & nurses at NDDH fought a battle that my four-year old body was too weak to fight on its own." 

"I’m glad to say this story ends on a positive note - around a week after being admitted my temperature began to drop & I regained my strength, so, the hospital staff eventually gave me the all-clear and I returned home." 

"As fate would have it, 25 years later (aka April 2018) I took a position working at Meningitis Now as Social Media & Digital Editor. In taking this position, I wanted to find out a little about what had happened to me as a 4 year old, so I called my Mum and asked. She told me the full story (some of which you’ve just read) and it made me feel a whole mixture of things, firstly gratitude towards her for ensuring I was seen & taken seriously by our Doctor. So I’ll say this: Mums & Dads, you know your kids better than anyone. If something’s wrong, get them seen by your GP straight away, and it can’t hurt to be familiar with the signs & symptoms of meningitis – don’t wait for ‘the rash’ (I didn’t get one at all)." 

"I also came to realise that when a child contracts a disease such as Meningitis, it’s not only the patient themselves who have to fight; the parent fights their own battle too. I asked Mum how she felt in this time, and she said ‘it was very scary – you didn’t recognise me, and we just didn’t know if you’d get better’. She slept in the hospital bed with me, held my head up as I was agonisingly x-rayed, and helplessly watched as her four-year old son went through a nightmare week." 

"Working for Meningitis Now has made me realise that parents, or in fact anyone affected by this disease, don’t have to fight it alone; there’s a dedicated helpline set up, support, counselling, local events, and a whole range of other things." 

"If you’ve been through a form of meningitis, share your story; every story shared helps us raise awareness, and awareness is a life-saver. If you’re going through this disease right now (Mums, Dads, children, grandparents, friends – whoever), we are here for you. Our vision is that no-one in the UK loses their life to meningitis, and that everyone affected receives the support they need to rebuild their life."

"I feel blessed to be able to share our story with you, and hope it helps somehow."