Riley's story

12th November 2014

Riley, now six, contracted meningitis and septicaemia aged one, which left him with multiple amputations and scarring. Here his mum, Bev, tells his story

Riley.gif
Amputations and scarring

Riley was teething at the time he contracted meningitis, so I didn’t think his initial loss of appetite and irritability was too unusual.

He seemed fine in the morning, but by lunchtime he was unsettled and had a slight temperature. I became more concerned when he didn’t want his 3pm bottle, and by 5pm he was very grizzly and unhappy and didn’t want any food. As the day progressed his condition got worse and he started projectile vomiting and had diarrhoea.

From one hospital to another

By 7pm he was clearly very ill so we rang the out of hours doctor who, although not overly concerned, referred Riley to the local hospital to reassure us. It was whilst Riley was at hospital that I noticed a small purple blemish. Doctors originally said this was chicken pox, but I knew differently. Within an hour his whole body was covered with a horrible purple rash and he was put into an induced coma so that he could fight the disease.

A specialist team from Bristol came down to Cornwall and took over Riley’s treatment. They sat us down and ran through the worst news ever; that Riley had meningococcal meningitis and septicaemia.

Riley was transferred to Bristol, and antibiotics were prescribed for the rest of us. My two older children moved in with their grandparents; while my partner Luke moved to Bristol to be near Riley.

A waiting game

By day nine, Riley was still in an induced coma but the medical staff realised he was responding well. After 12 days, he transferred to another Bristol hospital for ongoing treatment; including a number of operations, where he stayed for a further seven weeks.  As a result of the disease, he has had half of his left foot, including his toes, amputated and part of his nose. He has also been left with severe scarring on his body.

Now, five years later, Riley is at school. He is doing really well and especially enjoys his football.

His illness continues to affect him; and, of course, the rest of us. He still needs medical treatment and further operations, and he has to travel to Bristol for these, uprooting family life. He will continue to need these as he grows up. I’m quite worried about him missing school, but we’ll deal with that as it happens.

Help at hand

We turned to Meningitis Now when Riley was first ill. We visited their website when Riley was fighting for his life in hospital, and from then on they have always been here for us through phone calls, home visits and family days.  We were also very grateful to receive a financial grant from them to assist with travel costs for hospital appointments. We really want to give something back, so we’ve arranged our own fundraising activities to support them.

At the time Riley became ill, I knew a little about meningitis, but my children had all been vaccinated; so Riley having meningitis was the last thing on my mind. I wasn’t aware of all the signs and symptoms of the disease, such as cold hands and feet.

Be aware and trust yourself

I can’t stress enough how important it is, especially in younger children who can’t describe how they’re feeling, to make yourself aware of all the symptoms; and trust your instincts. You know your child better than anyone; if something’s not right, seek medical help quickly. 

I thought all my children had been vaccinated and that this would protect them. It didn’t cross my mind that having the jab is not protection against all strains of the disease.


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