Two-year-old boy's illness which leaves him unable to walk is so rare doctors do not have a name for it

Unique: Alfie Jones, two, suffers from an illness so rare it doesn't even have a name

A two-year-old boy from Wales is the only person in the world to be diagnosed with an illness so rare doctors do not even have a name for it.
Alfie Jones, from Bridgend, Wales, baffled doctors when he was born due to his unprecedented number of different health problems, which include a hole in the heart, deafness and partial blindness.
Doctors have simply called Alfie’s illness an ‘unbalanced chromosome rearrangement’ which has never before been diagnosed.
Alfie is unlikely to ever learn to walk due to his dislocated hips and has not learned to talk, but his mother Marie, 37, says her son is ‘a little ray of sunshine.’
She said: ‘Despite everything that's wrong with Alfie, he is a very happy, content little man who is loved and adored by all who meet him.
‘We have got to the stage where we look beyond his condition and see him as just our son and I love him so much,
‘We were having some problems as a family before Alfie came along but he made us stop and think about what is important.
‘He is the glue that holds our family together.’
Doctors confirmed no one anywhere in the world has been diagnosed with condition which affects chromosomes number 11 and 15.
Marie and husband Ken, 43, say that medical experts have been unable to tell them how long Alfie will live for.

Despite the uncertain future, the couple say they are the luckiest parents in the world to have a son like him – especially as he has just learned to smile.
Marie, a mother-of-six said: ‘The first question we wanted to ask was how long is he going to live but nobody knows because there have been no previous cases.

Multi-problematic: Alfie, with his parents Marie and Ken, is unlikely to ever learn to walk, is deaf and partially blind

‘The doctors have told us he is unique, they've never seen anything like it before. We don't really know what to expect in the future.’
Marie and her husband are trying to raise £20,000 to pay for a sensory room and everyday equipment vital for Alfie's survival and happiness.
Marie said: ‘If we get the funds together to put the right amounts of input in then we hope Alfie will live a long and happy life.’
Community paediatrician Dr Elaine English, based at Bridgend's Princess of Wales Hospital, said: ‘I have never seen the condition Alfie has and would not expect to again.
‘He is a really cheery chappie. He's a delightful little boy and his family are amazing.’

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