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Ben Foy, 8, loses appeal for narcolepsy drugs
10:07am Thursday 12th September 2013 in News
AN EIGHT-YEAR-OLD boy from York has lost his appeal against a health bosses’ decision to refuse him medication for his condition.
As reported in The Press on Saturday, Ben Foy, from Strensall, suffers from narcolepsy and cataplexy, which means he suddenly falls asleep or collapses.
His family believe his conditions were triggered by the swine flu jab Pandemrix, a link which has been verified by experts in Sweden but not in the UK.
The family was originally told they would receive the drugs modifinal and sodium oxybate, but the former was stopped on medical grounds and the latter due to conflicting guidelines.
An appeal against the decision has now been rejected, after being considered by a funding panel.
Ben’s grandfather, Brian Hamilton, said they had braced themselves for the rejection notice, and the family is now writing to York Outer MP Julian Sturdy, who had said he would take up their case.
Ben, who attends Robert Wilkinson Primary School, can fall asleep up to 20 times a day and often collapses without warning.
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