Articolo tratto dal sito del Daily Mail:
On the outside, Bethany Jordan looks like any healthy little girl – cheeky grin included.
But on the inside, she has been pieced together differently from everyone else.
Dubbed the ‘Jigsaw Kid’, Bethany was born with five spleens, a hole in the heart, a diseased and back-tofront liver, a right lung formed as if it was a left one, and her stomach on the wrong side.
Doctors warned her parents Lisa and Robert there was little chance she would survive birth.
But she did, and six years later is still defying the odds.
Bethany, of Stourbridge, West Midlands, suffers from Ivemark Syndrome, a very rare disorder characterised by a poorly-formed cardiovascular system and having organs in the wrong place.
It means she cannot stand up to some of the normal rigours and strains of an average child. When she exercises too much, Bethany’s heart can be seen beating through her back.
There are so few sufferers – one in 150,000 – and each case is so different, that very little is known about the condition. The cause is thought to be genetic.
Yesterday her mother said: ‘Underneath her skin everything is back to front and jumbled up.
‘We have to really watch her because she gets tired very quickly because of her condition.’
Her five spleens – each much smaller than a healthy one – do not work effectively at filtering her blood, leaving her at risk of harmful infections.
‘It means that if she gets ill it takes a lot longer for her to get over it because she has a very low immune system,’ said Mrs Jordan.