Sunday, 1 July 2012

Three sisters who are ALL going blind due to rare genetic disease



This is the tragic family picture that they will have to remember and cherish for the rest of their lives.
Sisters Ashlea, Leanne and Carys Looms all have a rare genetic disease which means they are losing their sight.
It means Ashlea, 25, will no longer be able to watch her four children grow up, Leanne 24, won’t be able to see her two children, and if Carys, 22, has a baby she may never see it, as the three sisters are all going blind.
As each day passes their sight deteriorates further. Ashlea and Carys already can no longer drive and they struggle to work. 
Family: Sisters Carys (back), Ashlea (left) and Leanne Looms who all have a rare disorder effecting their sight with Ashlea's daughters Jessica, Brooke, Gracie-May and Esme and Leanne's children Oliver and Ryley
Family: Sisters Carys (back), Ashlea (left) and Leanne Looms who all have a rare disorder effecting their sight with Ashlea's daughters Jessica, Brooke, Gracie-May and Esme and 

Leanne's children Oliver and Ryley
But they are determined to watch their six children grow up for as long as they possibly can.
Ashlea, who has daughters Jessica, eight, Brooke, five, Grace-May, two, and newborn Esme, said: ‘At the moment there is no cure for our condition. 


    'We know that one day all three of us will be blind and we make the most of each day with our children and family whilst we can.
    ‘We just all wish that we could have our sight back, but we know that is not going to happen. We won’t be able to see our children grow up, so we cherish every moment with them.’
    Sisters: Carys, Ashlea and Leanne are intent on making the most of their sight which is deteriorating because of a rare genetic disease
    Sisters: Carys, Ashlea and Leanne are intent on making the most of their sight which is deteriorating because of a rare genetic disease
    Brave: Although Leanne, pictured here with her two children Oliver and Ryley, is losing her sight more slowly than her sisters she is still facing the prospect of going blind
    Brave: Although Leanne, pictured here with her two children Oliver and Ryley, is losing her sight more slowly than her sisters she is still facing the prospect of going blind

    Ashlea, who lives with partner Sean Johnson, in Radcliffe, Manchester, was the first to be diagnosed with the condition Stargardt Disease in December 2008, when she was pregnant with her third daughter.
    She said: ‘I started having spots in front of my eyes and had bad headaches. At first I thought it was due to my pregnancy, so I wasn’t worried at first, but mum insisted that I get it checked out.
    ‘When I was tested at the hospital they told be that I had this disease. They told me that I could lose my sight and I was absolutely devastated. All I could think of was how I was going to look after my children. 
    ‘I had another baby on the way too - would I ever see them grow up.’
    Stargardt Disease is a hereditary eye condition which affects the central area of the retina called the macula. There is no cure for it.
    Doctors then tested her two sisters Leanne and Carys for it. The girls also have a sister Laura, 29, and brothers Alan and Robert,  but they have a different father so they didn’t need to be tested.
    Two weeks later the three sisters were given the shattering news that they all had the condition. They were going blind too.
    Alesha said: ‘It was devastating. We just hugged each other and couldn’t stop crying. We were devastated that we may not see our children grow up or get married.’
    Ashlea and Carys are both now partially sighted. They can’t drive anymore, and daughter Brooke has become Ashlea’s eyes.
    Tragic: Ashlea with her four children, who she says have already had to learn to act as her eyes because of her sight is rapidly deteriorating
    Tragic: Ashlea with her four children, who she says have already had to learn to act as her eyes because of her sight is rapidly deteriorating
    Devastated: The girl's sister Laura Hall, who doesn't suffer from the disease, says she wishes she could take on the condition to ease their suffering
    Devastated: The girl's sister Laura Hall, who doesn't suffer from the disease, says she wishes she could take on the condition to ease their suffering

    Ashlea said: ‘I can’t see the television anymore, or read text messages on my phone, and when I take Brooke to school, she has to watch out and tell me if there are any steps infront of me. 
    'She has become my eyes for me, she watches out for me and makes sure I don’t bump into anything or fall.’
    Leanne’s sight is better than her sisters, although hers has started to deteriorate too. They all wear special lenses to try and slow down the deterioration and are taking care of their health.
    Their elder sister Laura, a mother of three, said: ‘It is heartbreaking that all my sisters have this awful disease.
    ‘If I could have just one wish, it would be that they could all have their sight back. I wish I could have it for them. Not being able to do anything to help them is heartbreaking.'
    The sisters are making the most of the time that they have left with their sight, and are enjoying family holidays and days out.
    Ashlea added: ‘We want to create as many wonderful memories that we can, so we are doing as many things as a family all together that we can.
    ‘We don’t want to ever forget what our children look like, so we are taking as many photographs as we can too.
    ‘We want to make the most of every day that we have with them. A mother should be able to see her children grow up. We won’t, and its heartbreaking.’

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