A CWMBRAN family are hoping that revolutionary new drugs in America will offer hope of survival for their 11-month-old daughter.
Amber Hartland was diagnosed with an extremely rare genetic disorder three weeks ago. Nick Hartland, her dad, said that Amber had been diagnosed with a rare genetic disorder, infantile tayshchs, which produces an enzyme that clogs up certain parts of her body.
Mr Hartland, 26, from St Dials, Cwmbran, said: "She could be blind and deaf and we thought there was no help for her."
He said that from six-months-old he and Amber's mum, 37-year-old Lesley, had noticed Amber had started to regress, she could no longer sit up and she lost interest in things going on around her.
He said they took her to the doctors as they thought she may be going blind and then 20 minutes later the doctors told them that Amber's life expectancy was only three or four years.
He said: "We were totally blown away by the news. We were told that she was the first case in Wales for over ten years."
Mr Hartland said that after the devastating news he started to contact medical organisations around the world and gain information on anything that could be done to help his daughter.
He said: "I found out that in America there is a potential trial for a new drug which could possibly save my daughter's life."
He said that Amber would possibly go to America in the next few months to trial the drug which offers hope to her and her family.
Mr Hartland said: "We felt so powerless to be told that there was nothing that could be done but now we have some hope to cling on to."
He said that friends and family, originally devastated by the news, had been very supportive and were sharing in their hope.
Mr Hartland said: "There is a way forward now that we can concentrate on to help Amber."
He added that a charity had been set up to help Amber. l Anyone wishing to donate money to the charity can contact the organiser, Lisa Davies, on 01633 874000.
PICTURE: Lesley Gronow and Nick Hartland with their daughter Amber
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