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Family's bionic boy is their pride and joy; MUM TELLS OF 18-MONTH-OLD'S PREMATURE AGEING SYNDROME.

Byline: DAVID POWELL

WHEN Thomas Burton was born with cataracts in his eyes doctors immediately suspected that the little boy had a rare illness.

Further tests revealed that he had problems with hearing and brain development, confirming their suspicion that Thomas has Cockayne Syndrome - a premature ageing disorder which means he is unlikely to live beyond the age of five.

Thomas is now 18 months old and proud mum Sue has spoken for the first time of how he copes with the condition thanks to the love of his family and the nurses and staff of the children's hospice Ty Gobaith where he stays overnight.

Sue, from Llanddulas, Conwy, said that when he was born in 2011 by Caesarean section he went straight into a special care baby unit at Ysbyty Glan Clwyd, Bodelwyddan.

"The doctors noticed very quickly there was something wrong with his eyes. Within a couple of days an opthalmologist found he had dense cataracts in both eyes. The cataracts were removed."

Doctors eventually diagnosed Cockayne Syndrome and he has the most severe form of the disorder.

Thomas had already undergone six operations before his first birthday and had numerous stays at Glan Clwyd and Alder Hey.

Despite that bleak outlook, Sue and the family have taken great pride and joy in their son.

She said: "He wears contact lenses and hearing aids, and all his food goes straight into his tummy through a special tube. His daddy says he's 'bionic'. Contact David call: 01492 574485 email: davidpowell @dailypost.co.Or go to Facebook Daily Post Conwy "He's very small, and his development is delayed, and I'm not sure whether he'll ever be able to sit or walk or speak, but he loves hugs and stories."

Sue said his "favourite place" was Ty Gobaith where he enjoys playing in the sensory room. "At night the staff look after him there very carefully, so I can have a rest," she added.

She described the hospice as a "wonderful place" for her son and thanked the staff there for their invaluable support.

"At Ty Gobaith, the nurses are always on the phone, day or night," she said.

She also thanked Ysbyty Glan Clwyd consultants Dr Duncan Cameron and Dr Val Klimach, as well as the Diana Nurses for all their care and support.

POWELL or Now local community midwives and HSBC are organising a 10 mile sponsored walk along Anglesey's coastal path on Saturday June 15. The event - dubbed the Ten for Thomas - will raise funds for Ty Gobaith.

There are only 300 children in the world diagnosed with various strains of the disease but it is widely misunderstood, with many youngsters forced to travel abroad for treatment by medics who specialise in the condition. ? Donate to the walk on 07717 300289 or email annhughes24@hotmail.com

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Thomas Burton loves 'hugs and stories'
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Publication:Daily Post (Conwy, Wales)
Date:May 29, 2013
Words:476
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