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St Helens mum urges Westminster to change stance on miracle CF drug

A St Helens mum's urging the government to change their stance on a miracle drug she says will potentially increase her sons life expectancy by another 20 years.

The Health Watchdog NICE found Orkambi to be an 'important treatment’ for sufferers of Cystic Fibrosis although it's not availible on the NHS due to cost.

Louise Barton from Thatto Heath's joining forces with mums of CF Kids around the country to petition Westminster after seeing the devastating effects the lung condition has had on her 8 year old son George.

"You're pregnant for nine months and you've got all these ideas and plans in your head what your child is going to do and all of a sudden when he's five weeks and a tiny baby your told he might not even reach forty. It just blows your world apart."

In just five days a petition has passed the 50,000 mark, once it hits 100,000 signatures the subject will be considered for debate in parliament. 

Here's a link if you want to read more about Orkambi and sign the petition - https://petition.parliament.uk/petitions/209455

You can hear Louise's story below

 

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