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Special present for battling Ralph
A BABY who suffers from one of the rarest genetic disorders in the world has received a life-changing birthday present.
Battling Ralph Dury was all smiles when he celebrated his first birthday with a very special party yesterday.
The youngster suffers from Cockayne Syndrome, but his parents, Melanie and David, are determined he should enjoy his life to the full.
Thanks to the generosity of Wearsiders, Ralph has been celebrating after receiving the 4,000 needed to turn his Seaburn bedroom into a specialised sensory room.
Family and friends raised 1,000 towards the scheme and after reading about Ralph's plight in the Echo, the North East branch of the Variety Club of Great Britain has agreed to fund the rest.
Melanie, 38, said: "Everyone has been so generous, we are absolutely delighted. It is amazing and the room will be a huge benefit to Ralph"
Ralph's condition means he will probably never walk or talk, but Melanie and David, 40, who are also parents to Annie, 11, say their son is a beautiful, happy youngster who is always smiling.
Ralph is one of just a handful of children – about 15 in the UK – who have the congenital type of the disorder, which is so rare it took doctors months to give the family, of Alston Crescent, a diagnosis.
When Ralph was 24-hours old doctors noticed he had cataracts on both eyes and started to find the underlying problems.
The youngster soon became ill with a viral infection and hospital staff
discovered his feed was going into his lungs, leading to him now being tube fed.
Doctors carried out exhaustive tests on the baby, but it was only when Melanie mentioned to the family geneticist that Ralph had become sunburnt, despite being in the shade, that a skin biopsy was sent to a specialist and the diagnosis of Cockayne Syndrome was confirmed.
Cockayne Syndrome is a rare disorder characterised by failure to grow, impaired development of the nervous system, abnormal sensitivity to sunlight and premature aging.
The condition can cause hearing loss, eye abnormalities, severe tooth decay and problems with internal organs.
Knowing her son's time will be limited, Melanie has quit her job as a college lecturer to care for him and is looking forward to playing with him in his new sensory room, which should be ready in a couple of months.
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Weather for Sunderland
Wednesday 08 February 2012
Today
Sunny spells
Temperature: -2 C to 2 C
Wind Speed: 16 mph
Wind direction: South
Tomorrow
Light rain
Temperature: 1 C to 3 C
Wind Speed: 9 mph
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