Saturday, 1 March 2008

Extraordinary People: Hope For Hayley

Finally got around to watching this. I've long had a fascination with the worst kind of nature's cruelty, which in turn sparks the most awe-inspiring human love. I'm totally intrigued with people who have incurable diseases, or who look radically different, and how they and their families cope with the worst kind of pig ignorance.
This documentary followed 9-year-old Hayley Okines, a progeria sufferer. I've seen a programme about her before and just found it mind-blowingly touching. I can't think of anything crueler than a disease where your child ages rapidly before your eyes. It just makes me think I might go mad if I think about it too much. It must be absolutely gut-wrenching to be able to do nothing to protect this frail little child. Just watching it floored me.
Watching a 9 year old child going to her best friend's funeral, who died of a heart attack at just 11 is just harrowing. The average life expectancy for a progeria sufferer is 13.
So in this show there was mention of a 'cure' for progeria. I can't understand how that works. Are they just suddenly going to be strong and healthy and look normal again? That would take a miracle. But it's a defective gene, so perhaps in the future they can stop people ever getting it. The ending was left open, so I don't know what happened. Dammit. I wanted to know.
Hayley was so articulate and it was so sad to see the simplicity of her thoughts as a child. Taken on a trip to Egypt she said, 'maybe I wouldn't get to see these things if I had progeria, so I feel happy that I've got it.' Oh to have that mentality in the face of serious illness.
It was interesting that they knew another family from Belgium who had a progeria son, and were told there was no chance of them having another child with it, it had never happened before. The chances were one in 8 million. So he had his vasectomy reversed, and they had a daughter born with it! That is truly shocking. So once their older son dies, all they have to look forward to is their daughter dying. Fucking hell.
'Is there any point ever having children?' asked Morrissey, decades ago, and still I suspect not. It just seems too painful.


little miss gnomide said...

i am totally obsessed with unusual individuals. have you ever watched the tv series, Carnival? it's off the air now, but you can get it on dvd.

lightupvirginmary said...

thanks- I'll check that out.