Tests show brave Amber doing well

As previously reported, three-year-old Amber went through crucial tests in July which would reveal whether or not doctors are losing the battle against time to halt her life threatening condition - a rare genetic disorder known as infantile Tay Sachs.

After weeks of fearing the worst Lesley and Nick Hartland, of Ellwood Path, Cwmbran, were told Amber's critical MRI test revealed her condition had remained stable, and has not got any worse.

Doctors did not expect Amber to live beyond 18 months. They feared the condition, which prevents fatty molecules breaking down in the body, had continued to progress in Amber's brain.

This would have left her little hope of survival, but as a delighted Lesley Hartland told the Argus, that isn't the case.

She said: "We didn't dare hope for this. It means her treatment is keeping the disease, which is extremely aggressive, at bay.

"Now we can begin to think about a possible cure through gene therapy when she's old enough - if we can keep the condition stabilised for another two years."

Amber's dad Nick said: "It's the best news we had since Amber was diagnosed."

Babies with the condition usually face a rapid and devastating decline.

The onset of blindness and deafness among sufferers is common, as well as the breakdown of internal organs, and eventually death.

But two years ago, thanks to a fundraising and awareness campaign, backed by the community and Argus readers across Gwent, Amber became the first baby in the world to try out a new experimental drug, called Zavesco.

So far it appears to have played a part in arresting her condition. The Hartlands have been in contact with doctors from the Tay Sachs Association in America, who have been eagerly following her progress.

It's there they hope to harness revolutionary techniques in gene therapy.

"When you think that the doctors didn't expect her to live beyond 18 months - it's just wonderful to be where we are," said Nick.