the girl whose muscles are turning to bone

[petchy]

did anyone else watch this? (channel 5, monday @ 9pm) it's got me in tears.... the little girl was so brave!!!!

and here was me complaining about rib pains that i know will go away in three months time... i've got nothing to complain about at all really.

 

No I didnt get to see but I really wanted to. What happened and what was wrong with the poor little girl?

 

[petchy]

she had this rare genetic disorder that meant that her muscles were occifying (turning into bone) and eventually would turn her into a living statue! it was so terrible... they were talking about having to make the choice of whether she wanted to be "frozen" in a standing or sitting position in the future, and her mum went around and talked to other people with the same disorder to try to see what would be the best for her. for the time being she was fairly mobile apart from her arms, but they knew it was a matter of time before it would spread. all over her back and arms you could see these lumps of bone growth under her skin... the story was so heartbreaking...

 

[*sam*]

I didn't watch it, but I have been lucky enough to meet Luciana, she is such a brave girl. My sister in law (to be) used to be a nursery nurse and looked after her when she was little, I met Luciana while I was with her and she introduced me. I have to admit that afterwards when I got into the car I absolutely bawled my eyes out. It is such a shame, but it didn't seem to bother her, she was such a happy girl.
Sam xx

 

The poor girl I can't even begin to imagine how that would be to live like that - why is that those who have it the hardest always still have a smile on their faces - they are so brave - especially kids. They just smile and carry on.