Viking Supporters Co-operative
Viking Chat => Off Topic => Topic started by: Not Now Kato on March 10, 2019, 03:47:41 pm
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A friend on another forum has a daughter suffering with Cystic Fibrosis and is seeking signatures on an online petion to ask the government to make life saving drugs available to CF sufferers. Here's his post on that forum
Can I please ask for a few minutes of your time. No parent should ever have to consider the strong possibility of outliving one of their children but I know like me, some others on TZ have to. So I am calling out to the many many decent folk here for support please.
Eddie has very kindly agreed for me post this up.
My eldest daughter Maisie has Cystic Fibrosis, predominantly an awful degenerative lung disease and has had the worst 12 months spending 4 months in Hospital including Christmas and New Year for intensive CF treatment. She is currently very poorly again.
Along with 10,400 other CF sufferers in the UK we really need your support please to sign a petition calling for life saving drugs to be made available for our Cystic Fibrosis sufferers who currently have an average life expectancy of just 31 years if they are fortunate.
This is the link to the online petition
https://petition.parliament.uk/petitions/231602
There is absolutely no further commitment required, literally just your signature to support the online petition calling for these life saving drugs to be made available but if you could share the petition with some of your friends and family for more signatures that would be fantastic.
We need to get the petition to over 100,000 in order for the Government to allow MPs to raise this scandal in Parliament. It's currently sat at just over 74,000.
Please help support my daughter and the other 10,400 CF sufferers in the UK, they so need this opportunity for a lifeline. Thank you very much for your time and hopefully your support. In the three years that Orkambi has been available 231 CF sufferers in U.K. have died when this treatment should have been available, please help to put an end to this.
If you could take a few minutes to sign the petition it would be greatly appreciated.
Thank you in advance.
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Done.
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Also done
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Done
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Done. CF is a terrible disease.
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Done
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Also signed.
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A lad opposite had a son born with it in the 90s. It was an awful struggle made worse when him and his partner split up. Dominic died in his teens but it was a terrible debilitating life. I still pay into the charity after all these years as it is such a worthy cause.
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Done