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.
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.'
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.
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.'
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.'
'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
Harvey was diagnosed with Achromatopsia at Moorfields Eye Hospital, London, in December 2009 after his parents noticed he was having trouble focusing.
They 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’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
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
Harvey was diagnosed with Achromatopsia at Moorfields Eye Hospital, London, in December 2009 after his parents noticed he was having trouble focusing.
They 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’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
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