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Leo S' meningitis story

19th August 2022

Leo was just 1 when he developed flu like symptoms which, by the evening, had developed into a non-disappearing rash. He was rushed to hospital where he spent the next month

Leo S's story

Meningococcal meningitis and septicaemia ravaged Leo’s body and even today, 17 years later, he is still facing operations on his legs.

Mum, Lucy, from Heathfield in East Sussex, tells their story here.

“Leo woke up late one morning in April 2004 and was unusually sleepy and irritable. He fed as normal but wasn’t himself. We checked his temperature and, given it was a little high, gave him Calpol.

“Things quickly escalated before Leo’s bedtime, when my husband changed his nappy and noticed a distinctive and non-disappearing rash in his groin area. Had the rash not appeared then, he would have been put to bed to sleep it off and probably would never have woken up.

“After a rushed journey to our GP, who diagnosed meningitis straight away, Leo was blue-lighted to Guys Hospital in London, where he stayed in PICU in an induced coma and fully ventilated for the next three weeks and in hospital for another 10 days.

Lost half his body weight

“He lost half his body weight and regressed with all the milestones that he had achieved; he had multiple areas of skin necrosis and some hearing loss.

“We arrived back at home after the doctors saying that they had no idea what was in store for Leo as he grew – that we just had to watch and wait.

“Difficulties with his learning arrived as he started school and he was, as he grew older, diagnosed with multiple learning difficulties although has managed to stay in incredibly supportive mainstream schools.

Growth plate damage

“He also began to walk with a limp and, after some investigation, was diagnosed with growth plate damage from the ferocity of the meningococcal bacteria. This, significantly, has impacted Leo’s life and been a little documented after-effect of meningitis. He has endured over 20+ surgical interventions to grow tibial and femoral bone, requiring Taylor Spatial frames, Precice Nail insertions, pins sites and ongoing pain and infections.

“The journey has been long and difficult, but he has survived and persevered. We know we are lucky; many did and do not make it and, for that, we are forever grateful.

“Meningitis did not take his life; it has interrupted it in sometimes immeasurable ways, but he is still here and fighting on.

Advice and support are essential

“Great advice and support through the school years are essential. Meningitis is like an evil force which strikes at any time; its after-effects lurk and creep up at any time to derail a child’s wellbeing.

“We had no idea of the journey ahead when we brought Leo home and would have liked to know more about what may lie ahead. Better education for parents and families affected by meningitis is key for understanding and good survival.

“We are through the worst of the surgeries now although Leo has one more major round of orthopaedic surgery to come next year when we will, again, be lengthening and growing femoral bone. The impact can’t be understated on family life. It affects and changes the direction of families irreversibly and is a very challenging and painful journey to watch and be a part of.

“Leo currently is in his final year of school, completing his exams before applying for Higher Education.”