This is Lorcán. Lorcán has cystic fibrosis (CF) Lorcán is two years old. Lorcán has been fighting a potentially life shortening lung infection for the last six months and treatment isn’t working.
There is an amazing drug called Orkambi made by Vertex that is not funded on the NHS, this drug could help Lorcán and thousands of others. Over 240 people in the U.K. have died waiting for it to become available. Vertex and the U.K. government are letting people with CF die because of a disagreement over cost.
Parents have had to find an alternative way of getting these drugs for their children and the Cystic Fibrosis Buyers Club have found a generic copy of the drug that individuals can legally import, it is a fifth of the cost. This is however still beyond what we can pay.
I’ve previously shared (one, two) content about my friend Jen‘s two-year-old son Lorcán, who suffers from cystic fibrosis, as well as joining in the #strawfiechallenge earlier this year. A particular aim of Jen has been to get access to a drug that could add decades to her son’s life, but which isn’t being made available on the NHS. Running out of options to get access to medicine that could dramatically improve her kid’s quality of life and prognosis, she’s now set up a GoFundMe and is soliciting donations.
#strawfiechallenge – 1 minute of simulated breathing difficulty in recognition of sufferers of cystis fibrosis
Today I’m attaching a clothes peg to my nose and breathing through a straw for 60 seconds. As I won’t be able to talk while I’m doing this, I’ll type an explanation why:
Like most people, I’ve spent most of my life lucky enough to not really know anything about cystic fibrosis. I first really became aware of it when my friend Jen‘s son Lorcán was diagnosed with it (you may remember I shared a video of hers previously).
It’s a lifelong disorder with no known cure.
It’s a genetic disorder, and as many as one in every 25 people carries the gene that can cause it. Inherit two genes and you’re a sufferer. Among other symptoms, it causes frequent lung infections and difficulty breathing.
I’m taking part in the #strawfiechallenge as an exercise in appreciating how difficult it can be to cope with reduced lung function. A new drug, Orkambi, is helping to extend the lives of sufferers in other countries around the world. But it’s not yet available in the UK. :-(
CF sufferers want #OrkambiNow. They need your politicians to act.
www.youtube.com/watch This video was made to raise awareness about the campaign to make a life saving cystic fibrosis medicine available on the NHS. Please share far and wide and go to a protest in…
This video was made to raise awareness about the campaign to make a life saving cystic fibrosis medicine available on the NHS. Please share far and wide and go to a protest in Belfast or London on 22nd June if you can! Thanks to everyone who contributed to the video and huge thanks to…
My friend Jen‘s been blogging and vlogging about cystic fibrosis – which her young son Lorcán has – in order to raise awareness of it and of a promising new treatment, Orkambi, which would very likely dramatically improve the lifespan and health of chidren like Lorcán… were it available on the NHS. For more information, including petitions you can sign, see their blog Little Fierce One.