TOMORROW Lesley Gronow should be celebrating her 38th birthday. But it will be a day without joy that she will spend anxiously in hospital at her baby daughter's side, praying for a miracle.
Little Amber Hartland (pictured) undergoes a brain scan tomorrow which could shed light on her life-threatening illness.
The clock is ticking in the search to help Amber. The 11-month-old has the rare genetic disorder infantile tay-shchs, and may have only four years to live.
She was diagnosed three weeks ago at the University Hospital of Wales, Cardiff - and since that day Lesley and her partner, Nick Hartland, have searched for some hope of a cure.
And as the Argus revealed yesterday, their Internet research revealed a potential drug trial in America.
The results of tomorrow's CT scan will be sent on CD Rom to Washington-based Dr Cynthia Tisst, who will use it to determine whether or not she can help.
"The doctor wants to see what damage has been done to Amber's brain. "There's a cell in Amber's body that doesn't destroy the fats being built up. That means she will eventually go blind. That's why if there's a trial coming up we want to be on it."
Amber's parents, of Ellwood Path, Cwmbran, were told just one child in a million is born with the condition, which affects the nervous system. Problems associated with infantile tay-shchs are supposed to start from the age of six months.
But Amber's illness seems to be following a different pattern; she can sit up and roll around - things she couldn't do aged six months.
And it is this apparent recovery, Miss Gronow believes, which has interested American doctors.
"Amber started having the symptoms at six months, but at nine and a half months she started getting better.
"That's why the doctors are interested. Nobody could tell us why she's regaining her skills. She shouldn't be gaining any skills."
Miss Gronow said the potential drug programme they hoped Amber could be put on would help her make a full recovery and reduce their anxiety. But there are risks. She added: "The drug has been tested on four children in America, in bone marrow and stem cell transplants, but the effects weren't as good as expected, because the children were too far gone with their illnesses."
Even though the couple know there is no guarantee of being put on a drug trial, or if the drug will work, they have to try.
She said: "It takes me about four hours to get to sleep because I always listen to her breathing. Every day we think, 'is this a step closer to her dying?' It's very scary." To help find a cure for Amber the couple have applied for charity status. They are awaiting official confirmation of their application before starting to raise funds for the possible trip to America. Well-wishers have already given £100 to kick-start the fund.
Anyone wishing to donate money to the charity can contact Amber's godmother, Lisa Davies, on 01633 874000.
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