No other family should have to suffer - that’s why we welcome vaccine deal

Published on: 05 May 2015

A DAD who lost his toddler son to meningitis has welcomed the news a potentially life-saving vaccine will finally be introduced in the UK.
Tyrone Johnson and wife Sarah had to watch their three-year-old son Ryan die just 36 hours after he first felt ill.
The disease had taken hold so quickly, the doctors and nurses at Bristol Children’s Hospital were unable to save him.
Since then, the family has raised nearly £70,000 for the charity Meningitis Now and have campaigned for the government to introduce the vaccine following a year of delays in price negotiations.
Tyrone, 51, said: “It is a relief the vaccine will be available to all children. The effects on people’s lives are massive. You don’t expect to outlive your child; it changes your life forever.
“What upsets me is that there have been cases like Harmonie-Rose from Bath who lost her limbs through meningitis. Technically she could have had the vaccine and might not have lost all her limbs.”
A year ago, in March 2014, the Department of Health announced that the Meningitis B vaccine would be given to babies from two months old on the NHS.
This was subject to price negotiations but talks with manufacturer Novartis didn’t begin until five months after the announcement.
Health secretary Jeremy Hunt said the delay had been caused by a ‘stand-off’ with Novartis as the company failed to agree a cheaper price.
Negotiations were concluded, however, after the vaccine was bought by GlaxoSmithKline which agreed a lower cost.
Tyrone said: “I’m not saying the vaccine could definitely have saved Ryan but, from what I’ve been told, I don’t think he would have passed away.”
Ryan died suddenly of meningococcal septicaemia, the blood poisoning form of meningitis, on Tuesday April 13, 2010.
Tyrone, a director of family-run loft conversion company C & A Johnson, said: “Ryan had his tea and ice-cream and when we were sat on the sofa he looked a bit peaky.
“He went up to bed ok but about 3am he was sick, which was unusual for him. There was no rash. He had a temperature so he slept in with us. He was sick again so we rang Frendoc and explained. They told us to take him to the children’s hospital.
“When we got there he was still talking ok but his eyes weren’t focusing very well. What we didn’t know was that his body inside was boiling; his temperature was going through the roof.”
The registrar noticed a tiny mark by Ryan’s groin and one behind his ear.
“Sarah and I were put into a side room for about 15 minutes and that’s when they told us they thought Ryan possibly had meningitis so they had to act fast. We knew what meningitis meant and what the repercussions were. We were just numb, relying heavily on the medical staff to do their best.
“They took him away and we didn’t see him for about an hour and a half. The next time we saw him, he was covered in a rash - he was purple. He then got progressively worse.
“Ryan was running around Cleve Rugby ground on the Sunday and we switched the life-support machine off at 6.30 on the Tuesday night. It’s just incredible how meningitis takes hold.”
Since Ryan’s death, Tyrone and 45-year-old Sarah, along with their other children Aaron, 24, Lydia, 19,  and Cameron, 13,  have raised nearly £70,000 for Meningitis Now, a charity which was formerly called Meningitis UK and originally based in Downend.
Their fundraising mission has been partly spurred on by wanting no other family to go through what they have been through and partly as a thank you for the emotional support received from Steve Dayman, who founded Meningitis UK after losing his 14-month old son Spencer to the disease in 1982.
Steve was instrumental in publicising the famous ‘tumbler test’ in the UK after hearing a Norwegian scientist describe how holding a glass up to a rash could help detect meningoccoccal septicaemia.
Realising that meningitis awareness would have had little effect in Spencer’s case, he decided to change his crusade towards funding vaccine research.
The Spencer Dayman Meningitis Laboratories officially opened in Bristol in April 2002 and now house a £2.5 million research investment.
Money raised for Meningitis Now continues to be ploughed into research, awareness and support.
Tyrone said: “Within 48 hours of us losing Ryan, Sarah went to the charity’s shop which was at the bottom of Cleeve Hill. Steve happened to be there and he’s been a rock ever since. The help the charity gives is amazing. If you are feeling down, you only have to pick the phone up and they are there for you.”
Tyrone said: “Ryan was a cheeky little chap. He always liked to make people laugh. He had a wicked sense of humour, even as a baby. He was just a lovely little boy. We think about him every day. He’s always there at the back of our minds.”

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