'We thought our son needed glasses – then doctors revealed he had 'Lorenzo's Oil' terminal brain condition
McCauley, 6, has lost his eyesight and is now struggling to walk
When young McCauley Riley kept tripping up, his parents assumed he was short-sighted and needed glasses.
But they were devastated to learn the six-year-old had a terminal brain condition, featured in the film 'Lorenzo's Oil.'
Now they face a terrible wait to see if his 12-year-old brother has the same condition and whether his sisters, aged 14, 15 and 23, carry the defective gene.
Heartbreaking: McCauley Riley only has a few years to live due to a terminal brain condition. His parents hope to raise enough money to take him to Benidorm
McCauley was diagnosed with Adrenoleukodystrophy, which affects one in 30,000 children in the UK.
The diagnosis means he has a life expectancy of between a few months and a few years.
His parents, Wayne, 35, and Catherine Riley, 42, said their lives were ripped apart when they heard the diagnosis.
In the three months since his diagnosis of Adrenoleukodystrophy (ALD), the young boy from Blackburn has lost his eyesight and is now struggling to walk.
The 1992 movie Lorenzo’s Oil brought the condition to public attention, telling the story of sufferer Lorenzo Odone from Virginia, USA.
Mr Riley said: 'We thought he was a normal boy with bad eyesight, but then he started walking into a lot of things.
'At school he’d walk into a wall and say other children had tripped him, but the teachers had been watching and there was no one around him.
'At that point we demanded that he had tests and it came back that his brain stems weren’t right. His genetics were pear-shaped.
'We sat in meetings for hours with specialists and I asked what the cure was. The man said there was none, and we were blown apart.
'I’d never heard of the condition, and it seems nobody else has. They do loads of tests on newborns, and they need to do one for ALD.
'If we’d have known about McCauley’s condition then, he might have been able to have a bone marrow transplant that would have given him a better lease of life till he was in his 20s. Having that now would kill him.'
McCauley suffers from the same condition as depicted in the Oscar-winning film Lorenzo's Oil from 1992 and starring Susan Sarandon (pictured)
Mccauley’s 12-year-old brother will be tested to see if he has the same condition, as it only affects males and symptoms can start later in life.
McCauley was taken to Lapland to meet Father Christmas in December, courtesy of a well wisher.
The Make a Wish Foundation have also organised a family trip to Florida in March and Blackburn Rovers players have met McCauley and presented him with signed shirts and a ball.
Now collections have begun around Blackburn to pay for McCauley to have more treats, including a longed-for holiday in Benidorm. He also wants to meet the cast of the ITV comedy named after the Spanish resort.
Wayne said: 'Since the diagnosis he has deteriorated very quickly. He’s now registered blind and is struggling to walk.
'He can make out images very close to his eyes, so we’re hoping he will be able to see the dolphins close up and remember them.
'Whatever he wants, he’s got. Not in a spoilt way, but because we want him to be able to enjoy himself and be as normal as possible while he can.
'He’s shy, but is a very strong-willed little boy. The doctor’s thought he’d be in a wheelchair by now and being carried around, but he’s still walking by himself and he’s still going to school.
'The other night he wanted to go out on his scooter, and we let him, because you can’t wrap him up in cotton wool.'
His mother Catherine, a care worker for the elderly, said: 'He still plays rough with his brother and sisters and we try to carry on as normal.
'The school have been amazing to him and insisted he stayed there with his friends and in familiar surroundings, rather than being put in a special school.'
ALD is an inherited recessive genetic disorder linked to the X chromosome. The disorder leaves the body unable to break down fat molecules, which build up and damage nerve cells in the brain and spinal cord.
There are several forms that ALD can take. The most devastating type is the childhood cerebral form which McCauley has, meaning that nerves in the brain are destroyed.
About 35 to 40 percent of all cases of ALD are this type, which usually appears between four and eight years of age in boys.
Those affected will usually become totally disabled in six months to two years, and die sometime after.
Catherine said: 'My message to other parents is to be aware of whether their child is bumping into things or losing co-ordination, because it could be the symptoms of ALD.
'More people need to know about this, and they need to know about it sooner rather than later so there’s more medical options available.
'If someone suspects their child is ill, they must demand blood tests and scans. Don’t take no for an answer.'