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19.8.12


The mother of a three-year-old girl with a terminal genetic disorder has pledged to take her to see the Seven Wonders of the World before the condition claims her life.Lola Bloomer is one of just 60 children in the UK living with Ataxia-Telangiectasia, or A-T, an incurable condition that causes increasingly severe disability and premature death.

But her mother, Jo, is determined to make her daughter's short life as full as possible and give her some unforgettable experiences. Most A-T sufferers are healthy for around two years, but their balance and co-ordination then begin to deteriorate rapidly.Tragically, many will be forced to use a wheelchair by the age of 10 and will need full-time care.

The condition also affects the immune system, leading to frequent chest and lung infections and a high risk of leukaemia and other cancers.With no current cure, children with A-T rarely live beyond their early 20s.

Jo, from Plymouth, Devon, who also has a 12-year-old son Will, wants to raise awareness of A-T and find a search for a cure after Lola's diagnosis in May.She said: 'Lola was about one-and-a-half when mother's intuition told me something wasn't right. She was clumsy and kept falling into things.'When I was finally told she had A-T I was devastated. I think I'm still in denial. It's like waiting for a time bomb to go off, waiting for the symptoms to start appearing.

'I could wake up one day and she could have pneumonia and die - it's like Russian roulette.'Something will get her but I don't know what it will be.'I'm carrying on from day to day like everything is normal, because it is. I'm just waiting for the day it changes.'Every day I wake up and look at her and think it's not happening because there aren't really any visual signs yet.

'But I'm a realist and very pragmatic about the things she will and won't be able to do as she gets older, unless a miracle happens.'She added: 'I want to be able to take her to Disneyland and do all the lovely family things with her and Will whilst she can still enjoy them.

'It's my dream to take her to see the seven wonders of the world.'The 'new' seven wonders of the world are the Great Wall of China, the Taj Mahal, the Colosseum in Rome, Christ the Redeemer in Brazil, Petra in Jordan, Machu Picchu in Peru and Chichen Itza in Mexico.

Mum-of-two Jo believes that by raising money for the A-T Society and awareness for others, it is helping her to cope with Lola's diagnosis.She said: 'I'm getting heavily into the charity side of things and I think that's my way of coping.

'I want to help the A-T Society raise enough money to research and find a cure for the condition within Lola's lifetime.'It helps give me hope for the future - the only bit of hope I have.'I feel like it's my purpose in life to raise awareness of the condition, like I was put here specifically to be Lola's mum.

'It's going to be a rollercoaster but I'm ready for it.'Our lives are not going to be ruled by Lola's condition - I need to keep life as normal and enjoyable as possible for as long as possible for the sake of both my children.'People ask me how I cope and I tell them I just have to get on with it - I'm a mum.

'Lola is so beautiful and has so much character, she really is a special soul.'She loves her dollies and cooking and she's really maternal but knowing that she will never be a mother, get married or have children is one of the hardest things of all.'The little life she does have needs to be as special as possible, but life doesn't always allow for that.

'If I could afford to I would spend life making sure Lola's life was as enjoyable and enriched as possible.'I now realise the importance of the saying 'live everyday like it's your last'.'Family friend Kevin McGregor has now pledged to raise £100,000 for Lola by arranging an event called the Mega-Tri.The event will see 20 men and women as far away as Ireland, Singapore and France come together to embark on a mega-triathalon in aid of the A-T Society next April.

A-T is caused by a defect known as 'mutation' on a particular gene, meaning that the gene cannot carry out its function properly.Due to this the gene cannot properly produce a protein called ATM, which should be in every cell.When two people carrying a single copy of the mutated gene have a child together and pass the mutated gene on, there is a one in four chance that the child will have A-T.

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