Lightning striking twice

2nd June 2017

Mum blogger Katy, who blogs about epilepsy amongst other subjects, lost her young son Charlie to meningitis in 2010 and since then has supported our work with awareness raising and fundraising. But, in a cruel twist, she too has contracted the disease.  Katy, seen here with daughter Emily, shares a recent blog about her experience here

Lightning strikes twice blog

“Six and a half years ago my life was changed forever. My baby son Charlie was diagnosed with pneumococcal meningitis. It turned our world upside down when he died six days after his diagnosis. As we lay with our baby while he took his last breath we couldn’t believe our cheeky little 15 week old boy had been so cruelly taken from us.”

“One of the important things I want to get across is not to wait for a rash. Charlie never got a rash and many people don’t. Please watch for the following symptoms ... fever, cold hands and feet; refusing food and vomiting; fretful, dislike being handled; drowsy, floppy, unresponsive; rapid breathing or grunting; pale blotchy skin; unusual cry, moaning; tense bulging soft spot; stiff neck, dislike of bright lights; and seizures.”

“We’ve spent the past few years fundraising and raising awareness of meningitis. It has been one of our main goals in life and we’ve raised over £35,000 for Meningitis Now.“

So much heartbreak so young

“We’ve since gone on to have a daughter who was the image of her brother at the same age. We also have another son who is now almost ten. He was three when his baby brother died and we’re proud of how he coped with so much heartbreak so young. They both talk about Charlie all the time and he’s still very much part of our family.”

“Meningitis is a word my friends and family have heard me use many times but this time it’s about me, not Charlie. In a cruel twist of fate my neurologist and my neuropsychiatrist believe all my problems stem from an infection. My neuropsychiatrist in particular believes it is from meningitis.” 

“Meningitis I hear you ask? The very same meningitis that killed your son? Well no, not exactly. It was probably viral meningitis and I didn’t even know I had it. How can you not know you had it? Are you stupid? Well it’s probably best we don’t answer that one but yes, it’s perfectly possible to have it and not know.” 

Don’t do things by halves

“What are the chances of two people in the same family having meningitis? The chances are very slim but hey, we don’t do things by halves in this family! If lightning was going to strike twice then it was going to be us.”

“So, how do you cope with having the after-effects of something that killed your baby?”

“Well, the truth is I’m relieved. Firstly to have an indication of why I’m so ill and secondly to feel just a little part of what Charlie went through. It bonds us even more and is something else we share. I want to share his suffering as any mother would. I want to be part of what he went through. I want to take something away from the pain he endured.” 

“There is something poetic in us both going through something similar. He will help me fight this and now I have several causes to fight. Bring them on!“

See more of Katy’s writing or follow her facebook page.

For more information about epilepsy, visit The Epilepsy society,  and follow Katy Mann on Twitter.