BATTLING Luke Gooch is back home against all the odds, after doctors gave him just 18 months to live.
As we reported in June, the Risca youngster was diagnosed with a rare, incurable disease, two years ago, at the age of four.
In April he endured a bone marrow transplant, and spent three months in hospital.
Right now, says his mother, Janice, you wouldn't know anything was wrong with him. The treatment is going well, and young Luke is desperate to get out and about.
But both she and dad Nigel know it's only a reprieve.
"It takes two years before they know the bone marrow has been accepted for sure - until then, it could be rejected at any time," said Mrs Gooch, speaking from the family home in Newport Road, Pontymister.
Even if that doesn't happen, the prognosis is bleak.
The bone marrow transplant, along with drugs and regular tests, can slow the progression of Luke's disease - adrenoleukodystrophy (ALD) - but at the moment it can't be stopped.
In the future, he faces gradual deterioration of the brain and all his senses.
The disease damages an insulating membrane surrounding nerve cells in the brain.
She added: "It's so hard. We've just got to take it a day at a time - it's like walking on eggshells.
"He wants to go out and do what any normal six-year-old does because he feels well in himself, but he can't."
Luke's immune system is so weak that a cold or infection could kill him. "He can't go swimming, and during a visit to the family caravan in Porthcawl over the weekend, he couldn't go on the fairground rides, or the beach, because sand could get into the sterile tubes permanently connected to his chest.
But despite this, Luke and his parents are daring to dream. "He wants to fly over to Florida, and swim with dolphins. At the moment he can't fly because he's not stable enough, but the doctor said that might change if he keeps improving," said Mrs Gooch.
Luke still visits Bristol Children's Hospital each week for checks and follow-up treatment.
Adrenoleukodystrophy featured in the 1993 film Lorenzo's Oil, starring Nick Nolte and Susan Sarandon, which was based on the true story of a father's search for a cure for his son.
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