a risk and a step to far imo

[2shoes]

just saw this young girl on the news, she has cp and can walk(not normally ) but she can yet her parents are risking everything(and 30 thousand) I assume so she can walk "normally"
but if it goeas wrong she will be paralised..........
yet she can f$$$$ walk!!!!!!!!!!

Oh god. I hate knowing about things like this. I don't have the emotional capacity to deal with it.

Money is helpful at reducing the stress of having a disabled child, but hrowing money at them cannot remove the disability. And the risk to the child? How can this be allowed?

I wish I could link to it, it was on the bbc local news(I am in the south) and her name is charlotte.

I don't know the details but risk of paralysis sounds unnacceptable - unless very small risk, there are always risks attached to everything.

is it the op they do as standard in the states but dont offer it here?? there was a lad of GMTV who had had the operation.

heres the link

think most children go to the St Louis childrens hospital in the states but it has been done here on the NHS thru ORLAU at the RJ&AH orthopaedic hospital in Oswestry although the acceptance criteria is very strict (19 patients accepted out of 53)

seems more that the parents have not accepted the disablity .I come to terms with teh fact that ds will not walkproperly nore will he ever run or climb stairs .

What disables him more is his speech

before and after here

That's really wound me up. It's the bits in the article about sports and recreational activities. Erm, she'd be able to do that ANYWAY, OK things might have to be adapted but you know...

Agree with Riven, it's all about normalising.

strange I said that to dh last night riven.
what happens if as she gets older she falls behind her "peers" in something else, say reading, what will they do then?
what annoyed me is the fact she can walk.

ds2 has mild CP & can walk very well considering, yes he wears splints & is never going to be as agile or speedy as his peers or walk as far BUT so what, I'm no bloody olympic athlete either.

I certainly would not risk a GA & surgery & 1 more minute in hospital for ds unless it were absolutely essential.
I consider every appnt & its benefits to ds's health & happiness.

Life is about so much more than just a pair of wobbly legs

like you said riven walking isn't the be all.
to me communication is way more important(yes we have had another day of dd playing with another trial voca)

I don't really buy this medical vs social model stuff. Their dd's disability might not be considered as severe as other kids', but, as ever, it's not about whose dc is worst off - there's no point comparing and competing - it's about their dd and them trying to make her life easier. It's bullshit to say that someone who can't walk is disabled by society, not their disability - sure, society doesn't help, especially with crap access, but life is harder if you have a physical or mental impairment. It is. So why can't parents try to make their child's life easier? Whenever something like this comes up, there's a real element on here of 'oh, so it's all about 'norms' trying to eradicate disabled people' but it's not. It's not these people making any kind of political statement or judgement on others' kids and choice. It's them making a decision to try to help their daughter. OK, the risks of it are worth debating and I personally don't think I'd go for it, but why do stories about parents trying things to help their child always get turned into case studies for 'norms' being against disabled people?

Givemesleep... I really am not trying to say its all about the most disabled & competition etc...
I would not have the op for ds2 (who is in many ways simialr to those children, although he also has ASD) nothing to do with making him normal or not. Just I would not take the risk of an OP & a GA, he has been through enough in his 7 yrs & giving him "normality" for me means limiting his hospital appnts etc.
It is about Choice
However IF as he gets older it is something he would choose himself (if able to make such choices) I would support him 100%
Disabled, means just that - less able, certainly no competetion!

although I have always said, give me a magic wand, or a tablet without side effects to remove his CP & ASD i would do it in a heartbeat.

I dont have a child with walking difficulties or cp but my gut instinct is that if I was in this situation I wouldnt go ahead with such an operation

Its major surgery and seems to involve major invasive work at the base of the childs spine - way way too risky and the child may end up in a wheelchair - which is crazy as atm she can walk!!

Sneezecakes link is interesting - yes the child can walk really well after the op, but I thought she was doing really well walking before! Also in the after she looks miserable imo, before she was clearly proud of her ability to walk and looked so happy!!!!

I think its great that everyone is different - who is to say what is normal and what isnt?

Not you, anon, sorry if it seemed that way. I agree: it's all about choice, but then people get judged for the choices they make and that's sad - it gets turned into something it's not.

No worries givemesleep, i can see what you
are saying, I was just worried my first post came accross a bit wrong.

givememoresleep if the operation doesn't work
she will be paralyzed
hardly helping your child if that happens.
why is it condemed as judging to have veiw these days