EIGHT OF MY CHILDHOOD FRIENDS HAVE DIED FROM THIS CRUEL DISEASE
A CYSTIC FIBROSIS sufferer has revealed to the Daily Express how the cruel disease has claimed the lives of his closest childhood friends.
Zach Machin, 23, faces a daily struggle to breathe with a lung function as low as 30 per cent due to his airways filling with mucus.
Now Zach – who finds talking a struggle – has written to explain the deadly cost CF exacts from friends waiting for Vertex’s life-saving drugs Orkambi and Symkevi.
Zach lives with his mother Sandra and fiancee Chelsey Walters in the small village of Pinxton, Nottinghamshire.
He is suitable for both Orkambi and Symkevi but not yet deemed ill enough to qualify for free drugs from the US pharmaceuticals giant under its compassionate-use scheme.
He writes: “All my life I’ve been in and out of hospital, at least four to five times a year.
“Throughout my time being cared for in the hospital children’s department I made many good friends – but all but one I have now lost to CF.
“Eight brave warriors who were friends of mine have passed away to this horrible disease.
“One by one, seemingly like dominos they have fallen around me.
“One was my first love. Every waking moment we spent on the phone, talking and laughing.
“We knew our time was limited with one another, even at the young age of 16. So we made the most of it.
“I remember the day she lost her battle. It was January 2, 2012.
“It was 6am and I was awoken by the door opening and as my mum walked into the room, I instinctively knew something had happened.
“She sat at the edge of my bed and looked me in the eyes and said, ‘Zach, Charlotte passed away this morning. I’m so sorry my son’.
“But Charlotte wasn’t my first experience of losing a fellow cystic fibrosis-sufferer.
“The first was a young friend named Chloe. She was only twelve years old when CF truly showed me its cruelty.
“I went on to find out that she had been called in for her long-awaited double lung transplant.
“The transplant was a success but her liver and kidneys started to fail.
“And after that, there was no going back. A few short hours later she was taken from us.
“And a few weeks later, the start of many friends’ funerals that I’ve been to, taken by this horrible disease.
“Seemingly almost one after the other, friends passed away in front of me.”
Zach explained that Vertex’s pipeline of CF drugs, which can help the body dramatically fight back against the symptoms, have finally given sufferers hope.
Frustratingly, in the UK they are only available on the health service in Scotland as Vertex has refused to strike a deal with NHS England.
He added: “Now CF-ers have drugs within our grasp that could help stop more terrible stories like mine and my friends’.
“They aren’t a cure but they affect the cause of our horrible illness, instead of treating the effects of it.
“Drugs like Orkambi, Symkevi and the future Triple Therapy drug are the only way thousands with CF have a chance of survival.
“We must fight this horrible disease and get the therapies to help prevent losses like this in the future.
“Many of us simply don’t have a lot of time left.”
‘Orkambi’s the only chance of survival for thousands with CF’