TOBY Berryman’s son Zach would have been 12 years old this year.

He would have just started secondary school, may have enjoyed playing football with his friends or been hooked on computer games.

But Mr Berryman and his wife Caroline will never know how their son might have turned out.

In January 2005 their 16-month-old little boy died from meningitis B septicaemia just 12 hours after falling ill.

The tragedy for Zach is that he was born too soon.

Ten years on, scientists have finally developed a vaccine to treat this particular strain of the disease, potentially saving hundreds of lives a year and preventing many more disabilities caused by its devastating effects.

But the drug has still yet to become routinely available as part of the national childhood vaccination programme, leaving Mr Berryman and others like him extremely frustrated.

He is backing a national drive by the Meningitis Research Foundation which is calling for the process to be speeded up.

Mr Berryman, 45, of New Church Road, Hove, said: “This vaccine was not available for Zach and so there was no way he could be protected against it.

“What is so frustrating at the moment is that many parents today do not know this vaccine is available.

“It is bad enough to have something like this happen to a child but knowing there was something that could have been done to prevent it is even worse.”

Mr and Mrs Berryman went on to have three more children – Benjy, nine, Roberta, seven, and Lyla, four months. But Zach is always in their thoughts.

He said: “Zach had always been fit and healthy but one night he became poorly and irritable and had trouble sleeping. “The next morning we noticed a tiny rash on his body. We called a doctor and Zach was rushed to hospital where doctors fought to save him.

“However despite every effort, the infection was too much for Zach and he died just hours after arriving in hospital. “It was the speed at which it all happened which was hard to deal with – one minute we had a healthy happy boy and then he was gone.

“It’s absolutely vital that a vaccine is made available as soon as possible so other families do not have to go through what we did.”

Mr Berryman said parents often assume their child is safe because they have had a vaccination for the C strain of meningitis.

However the B strain is more common and virulent and has taken scientists longer to defeat.

He said: “We have missed out on Zach, and Zach has missed out on so many things.

“I just want more people to be aware of this vaccination and to put pressure on the authorities to make it available.”

A Department of Health spokeswoman said: “We are very clear that we want to see this vaccine introduced as soon as possible to help protect children from this devastating disease.

“The JCVI recommended that a MenB vaccine be introduced, but only at a cost-effective price — below the price published by Novartis. We need to make sure NHS funds are used effectively and negotiations are continuing.”

It was recommended a year ago

The Joint Committee for Vaccination and Immunisation (JCVI) recommended a vaccine against meningitis B be routinely given to children in the UK a year ago.

The Meningitis Research Foundation has said lives are still being lost and put at risk while the negotiations between the Department of Health and the drug’s manufacturer Novartis continue.

Foundation chief executive Chris Head said: “We appreciate the JCVI stated that the vaccine recommendation was subject to a cost-effective price being agreed between the vaccine manufacturer and the Department of Health, but these price negotiations have been ongoing since July 2014 and have stalled.

“The cost effective price range for this vaccine was published in October last year with an upper limit only just over £20 – a substantial saving on the official NHS list price of £75.

“As both the manufacturer and the Government are negotiating within this published cost-effective range, we cannot see why an accommodation cannot be reached.

“We also realise there are many pressures on NHS budgets but this Government claims to want people to be fit for life, throughout their life.

“Surely the answer is to protect future generations by vaccinating to prevent disease?

“We’d also like to see a MenB vaccine for older children introduced and a programme for adolescents.

“A number of deaths at university at the beginning of the academic term demonstrate meningitis is still a very real threat to this age group.”

‘I am one of the lucky ones’

For Carol Taylor and her children, Mother’s Day tomorrow has a special significance.

Every year they celebrate not just the day itself but also the fact Mrs Taylor, 58, is fit and healthy and still with them.

Just eight years ago Mrs Taylor fell ill after enjoying the day with one of her daughters.

She returned to her home in Lindfield felling shivery and flu-like. Her condition quickly deteriorated through the night.

The next morning her daughter Anna, then 26, discovered Mrs Taylor collapsed on the bathroom floor.

She was rushed to the Princess Royal Hospital, in Haywards Heath, before being transferred to the Royal Sussex County Hospital in Brighton where she remained on life support for almost a week.

It was several days before tests showed she had contracted the B strain of meningitis but against all the odds Mrs Taylor went on to make a full recovery.

She said: “I remember feeling unwell earlier in the day and that I wasn’t really thinking straight but there isn’t much more than that.

“I had absolutely no idea how ill I was. I knew I felt terrible but I just thought it was an ordinary virus.

“I am just so grateful my daughter was there at the time and called an ambulance, as it meant I got the antibiotics I needed really early.

“I was pretty much at death’s door and it was a terrible experience for my family.

“I just feel so lucky to be here. Going through something like that really does give you a new perspective on life and you have to make the most of it.

“Mother’s Day is always more important to us as a family now.”

Mrs Taylor said it was vital the vaccine was made available as soon as possible.

She said: “The sooner babies start getting it, the sooner they are protected as children, teenagers and adults. Meningitis can affect people of any age – I am one of the lucky ones.”