FUNDRAISING efforts for Amber Hartland, who needs revolutionary treatment which could save her life, could soon reach £35,000.
Amber, one, could die within four years of the rare genetic disorder infantile Tay Sachs.
Her parents, Lesley and Nick, hope an experimental new drug, Vavesca, will save her life - although there is no guarantee.
They will travel to America on April 24 to see a doctor who may be able to help Amber.
And Dr Edward Wraith, of Manchester Children's Hospital, one of the UK's top Tay Sachs experts, is trying to get the drug for them.
Mrs Hartland, 38, of Ellwood Path, Cwmbran, said: "Dr Wraith said without doubt Amber has Tay Sachs but she is not a typical case.
"She's not regressing like the other children who have the disease.
"If we can get the drug over here it would be better for us.
"We would still have to go to America at some point and if it doesn't work she will need stem cell therapy.
"The doctor said if nothing happened within the year to make Amber better we will have to try something else.
"If it did work we could keep on it but it's the first time it's been used on Tay Sachs."
Dr Wraith told the Argus there was no doubt about the diagnosis - but the only way to see if the drug would work for Amber was to try it.
He said: "The drug has been licensed for other diseases but we want to use it off-licence and I have to get the makers' approval first.
"If the drug doesn't work then Amber's condition will deteriorate and she will die."
The fund set up to help Amber is going strong.
The latest effort was a charity football match held on Sunday between four teams of workers from Northern Automotive, Gilwern, in Duffryn Park, Blaina.
During the competition male workers donned tu-tus, wellies and women's dresses while the ladies wore traditional football kit and ordinary clothes.
The event is expected to contribute more than £350 to the Amber Hartland Fund, which currently stands at £26,000.
Another £8,000 is believed to be waiting to be deposited from various sources.
Donations can be made at branches of the HSBC branch quoting account number 3141 5409.
* Pictured, workers from Northern Automotive in Gilwern, left to right, Ian Reynolds, Paul Lane and Andrew Madden
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