Meningitis in your words

Riley's story

  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Amputations
Riley was teething at the time he contracted meningitis so his initial loss of appetite and irritability was not unusual. He seemed fine in the morning but by lunchtime was unsettled and had a slight temperature.

His mum, Bev, became more concerned when he didn’t want his 3pm bottle and by 5pm, Riley was grizzly and unhappy and didn’t want any food. As the day progressed his condition got worse, with projectile vomiting and diarrhoea.

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

A special team from Bristol came down to Cornwall and took over Riley’s treatment. They sat the family down and “ran through the worst news ever”, says Bev, that Riley had meningococcal meningitis and septicaemia.

Riley was transferred to Bristol and antibiotics were prescribed for the rest of the family. Bev’s two older children moved in with their grandparents and she and her partner Luke moved to Bristol to be near Riley. Nine days later, Riley was still in an induced coma but responding well, and was soon able to transfer to another Bristol hospital for ongoing treatment, including a number of operations over a further seven weeks.

At just one year old, Riley had half of his left foot and part of his nose amputated as a result of the disease. He was also 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.

But his illness continues to affect him and, of course, the rest of the family. Riley stills needs medical treatment and further operations, and has to travel to Bristol for these, uprooting family life. He will continue to need these as he grows up. “I’m a bit worried about him missing school but we’ll deal with this as it happens,” Bev says.

The family turned to UK charity, Meningitis Now when Riley was first ill. “We visited Meningitis Now's website when Riley was fighting for his life in hospital, and from then on they have always been here for us,” Bev said.

Riley’s family has been in touch with the charity ever since, through phone calls, attending a family day and having a home visit. The family has also received a financial grant from the charity to assist with travel costs for hospital appointments, but they have also given something back by organising their own fundraising activity to support the charity.

At the time that Riley became ill, Bev knew a little about meningitis, but as all her children had been vaccinated, Riley having meningitis was the last thing on her mind. And she wasn’t aware of all the signs and symptoms of the disease.
“I can’t stress enough how important it is, especially in younger children who can’t describe their symptoms, to make yourself aware of them all,” Bev says. “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,” Bev adds.

Bev volunteers for Meningitis Now in Stroud.

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