I've just watched the programme on Channel 5 about Hayley Okines, who has Progeria.

I just wanted to say how touched I was at seeing this beautiful, bubbly little girl and yes, I cried. It really makes one appreciate what we have, even though we may moan. She really is an extraordinary little girl.

Amazing and wonderful little girl........ i saw it too. puts things into perspective doesnt it ?

I watched this too, having watched the previous programme about her also. She is an amazing child with such a strong and enchanting personailty. She takes it all in her stride and never seems to complain.

I know a few people (probabaly me included) who could learn a lesson or two from her.

Heart breaking stuff indeed.

I remember seeing a similar programme about this disease some years ago. It showed a gathering of sufferers and their parents from all over the world (organised by the parents of an American boy in the advanced stages of it). Apparently a feature of this disease is the pleasant, happy and good natured dispositions of the children - so I was not surprised that Hayley seemed such a nice little girl.

I didn't see the programme...... and I have not heard of Progeria before. What is this?

Originally posted by LoopyLou
I didn't see the programme...... and I have not heard of Progeria before. What is this?

It's a terrible disease where the child ages between 8 & 10 years faster than normal, so in effect, a child of 7 actually has the physical body of a 70 year old. This includes total hair loss, thinning skin resulting in sores from just sitting too long, athritus, heart disease and all problems associated with old age.

Most sufferers will not live much beyond their early teens.

A friend of mine once went on a web site Rotten.Com I think it was called and it had a pic of a child with this disease and to my discust the heading was Alien Baby. It is this attitude which I find really offensive that is why it is so important to learn about diseases like this and it was heart warming to see this little girl with her school friends who had no such attitude - unlike the so called adults creating sick web sites. :rant:

Progeria is a very rare condition.

I agree about the sick websites! they make me very angry

They had a photo of someone with "treacher -collins" syndrome on one of the pics. (T-c syndrome is where the jaw and ears/lower face don't develop properly, -think a very exaggerated "gail platt", with very little chin etc) and thesite was making fun of this person. i think that it's vile, to do something like this.

I was very touched by this programme. and the frankness with which the parents and grandparents of this incredible little girl spoke about what the future holds for them, and Hayley in particular...

I detest it when the media make disabled people out to be "suffering saints" etc. i hate all that "brave but noble and dignified" stuff.

however, this programme really did show a beautiful, sunny, happy little girl.

it didn't glorify, it was matter of fact. Which I liked. Her sunny personality shone through.

there were two bits that really made me sniffle:-

The bit where Haley's mother talked to her grandma about the hospice and the "cold room", and the end bit, in the playground when Hayley looked sad,when her schoolfriends were running around the playground, and she couldn't.

PT