PARENTS

The Tragedy Of Three Sisters Who Will Miss Seeing Their Children Grow Up As They Slowly Lose Their Sight To A Genetic Disease

02/07/2012 15:53 | Updated 22 May 2015
The tragedy of three sisters who will miss seeing their children grow up as they slowly lose their sight to a genetic disease  Worldwide Features

This is the tragic photo that this family will have to remember and cherish for the rest of their lives.

Sisters Ashlea, Leanne and Carys Looms all have a rare genetic condition called Stargardt 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. 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, says: "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.

The tragedy of three sisters who will miss seeing their children grow up as they slowly lose their sight to a genetic disease  Worldwide Features

"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."

Ashlea, who lives with partner Sean Johnson, in Radcliffe, Manchester, was the first to be diagnosed with the Stargardt Disease in December 2008, when she was pregnant with her third daughter:

"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.

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When I was tested at the hospital they told me 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?

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Stargardt Disease is a hereditary eye condition which affects the central area of the retina called the macula. There is no cure for it.

The tragedy of three sisters who will miss seeing their children grow up as they slowly lose their sight to a genetic disease  Worldwide Features

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 as they have a different father, 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.

"It was devastating," says Ashlea.

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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.

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Ashlea and Carys are both now partially sighted. They can't drive anymore, and daughter Brooke has become Ashlea's eyes:

"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 in front 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."

The tragedy of three sisters who will miss seeing their children grow up as they slowly lose their sight to a genetic disease  Worldwide Features

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, says: "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.

"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," says Ashlea.

"We don't want to ever forget what our children look like. 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 it's heartbreaking."

Words: Lucy Laing at Worldwide Features

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