The family of a boy who developed the sleeping sickness narcolepsy after a swine flu injection is hoping for victory after a five-year fight for compensation.
Tragic Sam Forbes needs around 15 naps a day and sees and smells dead people in his nightmares after having the NHS jab in the 2010 epidemic when he was four.
The lad, now 11, was also left with 13 other chronic or severe neurological problems caused by the Pandemrix vaccine given to six million people.
Yet even though a link between the drug and narcolepsy has been established by Public Health England – with just one in 55,000 inoculated affected – the Government has spent five years fighting compensation claims.
Now Sam’s parents Di and Mick are hoping a Court of Appeal decision last month, upholding another narcolepsy victim’s claim, will end her battle for justice for her son.
Di said the family nightmare began shortly after his jab with the vaccine, made by GSK. “It was a friend who first noticed a change in Sam’s behaviour,” Di reveals.
“He said Sam was being naughty and different to his usual self. He’s a bright child, but he started falling behind at school and struggling with basic spelling. And his behaviour got worse.”
Sam’s health deteriorated and he had a string of hospital appointments before doctors discovered his narcolepsy.
They also found he has catoplexy – similar to epilepsy but longer lasting.
And his heat regulation system is damaged, meaning that even in warm sunshine he can develop hypothermia.
As well as sometimes falling down asleep in the street, he suffers anxiety and depression – and is plagued by nightmares.
Di, 50, said: “In his dreams he can see and smell dead people. One night he came downstairs and told us he could smell rotting meat in his dreams.
“He would wake up terrified and then we would get him back to sleep. But the dreams would start again where they left off.”
Di, of Batley, West Yorks, had to quit her job at an engineering business to become Sam’s full-time carer.
She said: “We want compensation so Sam can enjoy a better quality of life.” Sweden, Finland, Norway, Iceland and France have already compensated Pandemrix narcolepsy sufferers.
“Our Government refused to acknowledge a link until 2013 – but have always fought claims.
The case upheld by the Court of Appeal was of a seven-year-old boy.
The DWP acknowledged a ‘causal link’ between his narcolepsy and the vaccine, but the case focused on whether he was disabled enough for compensation.
Fears the Government would go to the Supreme Court were allayed by Di’s local MP Tracy Brabin who called a debate in Parliament that helped open the way for other sufferers to claim.
She said: “In these rare, traumatic cases it’s only right the Government steps up”.
Experts estimate 100 people in the UK were affected. The pay-out is a one-off £120,000.
A Government spokesman said: “All decisions take into account the specific circumstances of each case.”
GSK said: “Patient safety is our No1 priority. It is crucial we learn more about how narcolepsy is triggered.
Di added: “We want to be able to move on. It feels like we have been fighting for so long.”