‘Jigsaw Kid’ lives with jumbled up internal organs
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Bethany Jordan, six, was born with many of her organs back to front but amazed doctors who had warned her parents, Lisa, 37, and Robert, 44, there was little chance she would survive birth.
Her problems mean that, while she looks a picture of health, she cannot stand up to some of the normal rigors and strains of an average child.
Bethany, sufferers from Ivemark Syndrome, an extremely rare genetic disorder, characterized by a poorly-formed cardiovascular system and organs in the wrong place.
Strangely, when she exercises too much, her heart can be seen beating through her back.
There are so few sufferers that very little is known about the condition or what could be its cause.
Her mother Lisa, who is a full-time mom, said: “To look at her she just looks like a normal girl, but underneath her skin everything is back to front and jumbled up.
“When she was born the doctors said her insides were like a jigsaw.
“It has been a bit of a nightmare but she is my star and I love her the way she is - I always will.”
“She is doing very well despite all of her problems, I think she’s a very tough little girl.”
Ingrid Gladki, spokesman for the Ivemark Syndrome Association, said: “It’s still a mystery as to why it occurs and I think more money needs to be put into research into it.”
Her problems mean that, while she looks a picture of health, she cannot stand up to some of the normal rigors and strains of an average child.
Bethany, sufferers from Ivemark Syndrome, an extremely rare genetic disorder, characterized by a poorly-formed cardiovascular system and organs in the wrong place.
Strangely, when she exercises too much, her heart can be seen beating through her back.
There are so few sufferers that very little is known about the condition or what could be its cause.
Her mother Lisa, who is a full-time mom, said: “To look at her she just looks like a normal girl, but underneath her skin everything is back to front and jumbled up.
“When she was born the doctors said her insides were like a jigsaw.
“It has been a bit of a nightmare but she is my star and I love her the way she is - I always will.”
“She is doing very well despite all of her problems, I think she’s a very tough little girl.”
Ingrid Gladki, spokesman for the Ivemark Syndrome Association, said: “It’s still a mystery as to why it occurs and I think more money needs to be put into research into it.”
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I tried to find other cases but did not come up with anything. Maybe somebody here has any more information? It's a really strange disease.
- 2 years ago
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ClipsFC
