Cystic fibrosis

[Williow]

My twin children have cystic fibrosis. A life limiting, life threatening condition. There is a drug that can drastically change their life’s, but the NHS won’t fund it. Please sign this petition and get this to parliament. Make a difference. Many thanks in advance!petition.parliament.uk/petitions/209455

I will.

Your life must be so tough, though I am sure you have much happiness from your little ones.
My family carries this disease. It’s horrible, I really hope this new treatment makes all the difference

Signed.

One of DD's best friends, who's 7, has CF.

Her parents live in hope that by the time she reaches the current life-expectancy, advances such as this, will have been made.

Thank you for your support! Yes life is tough, but we get on with it as best we can. I am determined they will have a ‘normal’ a life as possible. Hoping with all my heart our voices will be heard!

My daughter is 17 and has CF.
She has the most common mutation.
But please dont be frightened, she is doing really well and the treatments and insight into the disease is so much better than it ever was in the past. She has fun and mainly does what any other 17 year old does (NOT smoking though!) although the numbers of meds are a PITA for her to remember.
Ive signed the petition, but am hearing good stuff about a new triple therapy with it, which is far more effective, and if the results in the final stage trials continue, then its almost certain to be funded.
which doesnt mean we wouldnt snap the hand off this drug if it were offered!

Signed. My nephew was born last month (10 weeks early) with bowel obstruction and a CF diagnosis. He's still in hospital and likely to be for another couple of months. I'm desperately hopeful that once he's strong enough to go home from the hospital that he'll be able to live as full a life as anyone else, filled with all the adventures and dreams that he can achieve.

Lost a friend at 20. Willl sign.