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Re: BBC Radio 5 Live

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> >

> > Been on the phone for 30 mins, kept taking it wider - 1:100 why

is

> nothing

> > being done, kids refused treatment - if we had 1:100 blind kids

> there would be

> > public outrage, research and special schools for them - we just

get

> ignored

> > - you can;t get from 1:10,000 to 1:100 in 10 years with

genetics -

> something

> > is happening to them - why is nobody in Governent and medical

> profession

> > asking WHY

> >

> > That as a parent I have to take very opportunity open to me to

> raise

> > awareness of the issues we face and thats why we wear t-shirts.

> >

> > Firends having to travel to USA to get treatment for kids the

> scream in pain

> > every day - ignored by the NHS

> >

> > That this is the " invisable " disability and people are nasty if

> they think

> > your child is misbehaving but put the t-shirt on they smile and

are

> nice to you

> > - thats a more positive environment for my kid - when he

> understands enough

> > to decide for himself - he can choose whether or not to wear

the t-

> shirt.

> >

> > They now want to speak to Bob Lowdnes again at TWAS - I said the

> much

> > reported excuse of not wanting to birng attention to the

disability

> was NOT the

> > reason, given Sam wears the other shirts on school trip on a

weekly

> basis for 2

> > years now.

> >

> > These days we don't hide disabled kids in attics - they are part

of

> the

> > community

> >

> > OMG buzzin now, this was a reseacher - I bet her boss says its

too

> policital

> > to run with the story now

> >

> > Mad Mandi x

> >

>

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