The little boy who is blinded by the light: Toddler can only see in black and white due to rare eye disorder
Harvey can only see black, white and shades of grey due to a rare vision deficiencyHis parents have just found out Harvey's younger sister also has the condition
11:40 GMT, 25 July 2012
Three-year-old Harvey Webb has a rare condition that means he is blinded by light – and has to wear special heavy-duty sunglasses to help him see.
Parents Louise and Andy, have resorted to keeping their curtains closed at the family home in Tonbridge, Kent, to help their son see their faces.
Harvey’s condition, known as Achromatopsia, means he is also completely colour blind – and can only see the world in black and white.
Louise, 35, said her son may never see a sunrise or sunset because his eyes cannot handle the light.
Harvey must wear special sunglasses to help him to see outside. At home the curtains are always closed
Andy, 34, a recruitment consultant, said: 'Normal daylight to him is like the glare you get when you are driving on a wet day and sunlight reflects off the rainwater on the road.
'We have to make everything as dark as possible for him to be able to see.'
ACHROMATOPSIA: A COLOURLESS WORLD
Achromatopsia is total colour blindness and is the rarest type of colour vision deficiency.
Children with the condition are born with faulty cone photoreceptors in the eye.
This means they see everything in shades of black, white and grey. They have general poor sight with blurry central vision and are very sensitive to light.
However, the condition does not get any worse as they grow older.
They can use their outer vision to read and get around.
Louise, 35, added: 'When we first moved into our house we were worried the neighbours would just think we were really unfriendly, as we always had the curtains shut.
'But we have to keep them closed to keep out as much sunlight as possible.'
Harvey puts on his prescription sunglasses when he gets up, and wears them until he goes to bed – they are designed to let only 10 per cent of light in.
The condition means Harvey struggles to play outside on bright days and he has to take cover from the rays.
The family have had to deal with comments from passers-by who think Harvey’s dark glasses are a fashion statement.
Louise said: 'It’s frustrating because obviously he can hardly see without them, and in the beginning | did worry about what people would think – a lot of people just think we put them on him to look cool.
'Thankfully most people are positive though, and say things like ‘cool shades’.'
Affecting just one in 35,000 people, the condition affects the retina meaning the cells responsible for colour and light sensitivity in the eye don’t function.
Andy and Louise Webb play with their son with the curtains closed
Andy and Louise have just found out their daughter Megan, 3months, has the same condition as Harvey
Harvey was diagnosed with
Achromatopsia at Moorfields Eye Hospital, London, in December 2009 after
his parents noticed he was having trouble focusing.
were initially assured this was down to a condition called Nystagmus,
but at seven months old they were told the devastating diagnosis.
Andy said: 'We were shocked, and felt numb as we hadn’t heard of the condition before.
'As children so much is learnt through sight and observing things outdoors, such as wildlife in the trees or a plane in the sky.
'With Harvey we need to find other ways to show him so we use books and TV.'
Harvey won't be able to drive when he grows up but will attend mainstream school
Harvey’s baby sister Megan, three months old, has also been diagnosed although she doesn’t need special glasses yet, and can wear normal ones in bright light.
Louise said: 'We were distraught when we first found out and it felt like we were going through a kind of grieving process because we knew they wouldn’t be able to see the world how we see it.
'They’ll never know though as they were born with the condition and we certainly won’t let it stop them doing what they want to do.'
Harvey now goes to Dorton House nursery run by the Royal London Society for the Blind, helping him to make the most of what little vision he has.
His sight means he won’t ever be able to drive, and will need extra help in the classroom, although he will still attend a mainstream school.
There is currently no treatment for the condition but both Harvey and Megan are taking part in research for a cure, partly funded by the charity Fight for Sight.
Dr Tony Moore, consultant at Moorfields Eye Hosptial, London, said: 'Harvey’s activities will be restricted by his eyesight, and he will be less confident outdoors because of his extreme light sensitivity.
'His vision is much worse in bright sunlight.'
Louise said: 'It’s quite difficult for Andy as he would love to teach Harvey to play football but his sight makes co-ordination a bit difficult.
'That doesn’t mean he won’t try though, and we won’t let him dwell on what he will find difficult.'
Visit www.littleheroesappeal.com for more information on their appeal to help expand Dorton House specialist nursery for blind and partially sighted babies and toddlers