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RAF Leeming family's desperation as fundraising for Fraja dries up
THE parents of a girl who has battled a rare cancer have spoken of their devastation after donations to their £500,000 drive to fund life-saving treatment slowed to a trickle.
Garry and Michelle Simpson said after surgeons confirmed their six-year-old daughter Fraja’s remaining MYCN-amplified neuroblastoma cells had vanished earlier this year, fundraising had dropped from £12,000 to a few hundred pounds each month.
Afghanistan veteran Mr Simpson, who is a flight sergeant with 90 Signals at RAF Leeming, North Yorkshire, said the family has been inundated with well wishes from people who thought the appeal was over, and that the appeal total had stood at about £190,000 since Christmas.
He said it had become apparent many people did not understand the fundraising drive was to fund treatment abroad, which is unavailable on the NHS, if Fraja relapses.
Some 80 per cent of children with neuroblastoma relapse and should tests continue to show the disease has not returned, Fraja will be declared free of the disease in five years.
The first round of relapse treatment would cost about £300,000 and subsequent treatment £200,000.
Should the RAF Leeming Community Primary School pupil not relapse, the appeal money will be passed to another child in need of treatment.
Mr Simpson, originally from Consett, County Durham, said: “Every single day we get questioned about whether we are still fundraising and we have to explain that Fraja’s situation has not changed.
“When a child looks sick that’s when people are most supportive. But when neuroblastoma comes back, it comes back quickly with a vengeance.
“We know a family that lost a lad to neuroblastoma last week, who had been clear of the disease for 18 months.
“We used to get random donations coming through, and while there are people taking on things, such as marathons, individually, we have only a few events planned for the summer and for many weeks now we have had not heard about any new events.
Mr Simpson, whose other children Howie and Erinn attend Durham School, added: “Every night and every weekend is taken up with meetings and trying to raise awareness, it’s never-ending, the constant worry is there as we still have to find £310,000.
“Bank Holiday Monday will be the first time over the Easter weekend that I get a chance to spend time with the kids.”
Fraja is set to undergo tests next month to see if the disease has returned.
For details of how to get involved, visit facebook.com/frajaellieappeal
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