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Harry R's story

27th May 2015

Jo’s son Harry, then aged 4, from Burgess Hill in West Sussex, fell ill in October 2013. Initially he had a headache, joint pain, a high temperature and was very sleepy

Harry R's story

But this wasn’t a recurrent childhood infection, Harry had contracted meningococcal meningitis and septicaemia.

Thanks to alert hospital staff he was treated promptly although the disease has left him with a range of after-effects. Jo picks up the story.

“October was not going well. On the Saturday my nan had sadly passed away. On the Wednesday Harry had come home from school with a bit of a temperature. He was just not quite right, but I assumed he was tired, as it was his first term in reception year at school.

Throughout most of Harry’s life he and his sister, Sophie, had been quite poorly with recurrent infections and no one could really pinpoint why. Over the rest of the week and the weekend he was okay, but not quite right. On the Monday my mum took him to the GP, who gave him steroids for his wheezy chest.

Then, on the Monday night, both he and his brother, Jack, were sick, so I just presumed they had both picked up a bug from school.

The next day, the 15th October, I left both the boys with my best friend Faye while I was at my nan’s funeral. I kept in regular contact throughout the day and Faye said they were fine, running around playing."

Cuddled while he slept

“However, just after they had eaten their lunch Harry came over very sleepy, so Faye just sat and cuddled him on the sofa while he slept.

When we came back from the funeral, Harry looked awful; he was really pale. He didn't know what to do with himself and just lay on the sofa. His temperature wouldn't come down with Calpol and his head and his shoulder were hurting. Still at this point I didn't expect meningitis.

I was tired and emotional from saying goodbye to my nan and not really sure what to do. I called my mum, who took Harry to the out of hours GP. The GP really wasn't sure what it was, but because of his past history of recurrent infections said it’s better to be on the safe side and send him to the Royal Alexandra Children's Hospital in Brighton.

The next few hours were a complete whirlwind. I remember walking up the ramp to the hospital with a semi-conscious Harry in my arms and he turned to me with an awful look in his eyes and said 'mummy, please hurry up.' My heart sank! We were seen really quickly and he was being assessed by a student nurse who was amazing!

It was while she was checking him that the rash started to appear. She turned to the nurse and said ‘I don't like that’ and within minutes we were rushed through. Harry was laid on a bed and he then lost consciousness."

A complete blur of doctors, nurses and information

The next few hours were a complete blur of doctors, nurses and information. They told my mum and me they suspected meningitis, but we didn't quite believe them. His sister had had a scare earlier in the year, which turned out to be a virus, and we thought this would be the same. I think it really hit me when they said ‘this little man is very poorly, we've got him a bed in intensive care, we need to stabilise him enough to move him and if he makes it through the night it will be a miracle!’

As a Christian my faith is my rock and so I knew that I just needed to pray. I think they all thought I had gone completely mad as I prayed over him, but I didn't care. It took four hours to stabilise him enough to move him to intensive care, where they decided they knew exactly what it was, so there was no point in doing a lumbar puncture.

There were so many people praying for Harry and I truly believe this is why he is so well and with us today.

After 12 hours in intensive care he had picked up so much they transferred him to the ward. Every day the doctors and nurses would just pop in to see him smile, as every day he improved so much, no-one could quite believe it."

Harry wasn't having any of it

“There was talk at one point of the potential of damage or loss of his right leg due to the rash, but Harry wasn't having any of it. He walked out of the hospital seven days later. He did get readmitted 24 hours later as he kept falling over, so after more tests and some brain scans and more antibiotics he finally came home 48 hours later.

Although he survived and so amazingly, meningitis has left its mark, not only on Harry but on me and his three siblings. He now has damage to his balance, an acquired brain injury, low muscle tone, ADHD and sleep problems. He's gone back to night-time wetting and lost all his fine motor skills.

However, he has defied the odds and when someone tells him he can't do something he will do it - like riding a bike without stabilisers. He can now do that!

Life is still hard though. At times everything seems like another battle - so many people don't understand the impact and after-effects of meningitis (even medical professionals) but I have every faith that with the right help and support now he has every chance of fully recovering from all these things.

I am so grateful to God for bringing Harry through, to the student nurse and the first year doctor for their quick thinking, to everyone at Meningitis Now for all your help, support and funding - you've been a listening ear, you've funded equipment, you've helped support me with information and a community support officer - thank you.”