AN experimental drug used to fight a deadly childhood disease is undergoing trials on American children - thanks to a Cwmbran toddler.

Two-year-old Amber Hartland, of St Dials, Cwmbran, suffers from the rare genetic disorder infantile Tay Sachs, a condition that prevents fatty molecules breaking down in her body, meaning they build up and destroy nerve and brain cells.

Children with the condition, which occurs in only one in four million, are not expected to live past the age of three.

After the Argus revealed Amber's condition last year, massive fundraising efforts from people all over Gwent which raised more than £30,000 allowed her parents Nick and Lesley to buy the experimental drug, Zavesca.

Now, the drug is being trialed on 10 children in the United States who suffer from the condition.

In an e-mail to the Hartlands, Washington DC-based Dr Cynthia Tisst, chairwoman of the US Scientific Advisory Committee, said trials of Zavesca were given the go- ahead thanks to Amber's "remarkable progress".

Lesley Hartland said: "Amber confounded the experts by reacting positively to Zavesca, so now they are using it in America.

"It is a really positive development and we are delighted."

Earlier this month the family took a much-needed holiday to Spain.

The week in Benidorm was the first holiday Amber has ever had.

Lesley said: "It was lovely for Amber to be in the sun.

"She seemed to like sitting and relaxing in her pushchair by the pool in the warm weather.

"We don't take her out at all at this time of year because we are worried she might catch a cold. Because of her condition it could easily develop into something worse such as pneumonia.

"So it was good for all of us to get away."

Doctors say Amber is making good progress and her condition stable.

A new sensory room built in the Hartlands' home is helping her development, and the family are in contact with the parents of a girl in Italy with the same condition.

"We talk to them regularly and share our experiences," said Lesley.

"Amber will be three in February and their daughter is a similar age, so it is a very uncertain time for us all."