58
58
2

Please help Luis to live longer

£11,790 of £18,000 goal

Raised by 58 people in 13 days
Created June 4, 2019
Luis is a kind, loving 8 year old boy who has cystic fibrosis. There is a drug called Orkambi that could help to slow his decline and give him a longer life but NHS doesn’t fund it because it’s deemed too expensive at the manufacturers asking price of £104,000 per patient per year. We have been campaigning together with thousands of others for access but we’re still waiting and negotiations are stalling again.

This photo shows Luis and I telling This Morning viewers how much he needs Orkambi and what life with untreated cystic fibrosis is like. Luis does between and 3 and 4 hours of treatments, physio and medicines every day - just to maintain his current level of health. Cystic fibrosis is progressive, so without a drug like Orkambi which tackles the root cause, reducing infections and the rate of lung function decline, Luis will get more and more poorly and suffer an early death. I am part of a group that has found generic versions of Orkambi and we have set up a Buyers club to source the best prices from around the world. It will still cost £20,000 + per year to treat Luis and I can't afford it all on my own. Any help that anyone can give will be hugely appreciated and will extend Luis' life. You can find out more about the Buyers Club here: www.cfbuyersclub.org  and https://www.bbc.co.uk/news/health-48357762 

39696760_1559683566993543_r.jpeg

+ Read More
It's Luis' 9th birthday today and the first one when I have not felt a massive fear of the future and anxious at the passing of his years. I know Lucaftor is not a cure for CF, nor can it cure his infections, but it's a significant step towards a better future and he'll soon be on the ladder to even better drugs to come. It will buy him and our family some time. I cannot express how much I appreciate everyone who has contributed towards making Luis' treatment a real and not too distant prospect. I will not cease in my efforts to campaign for treatment for all patients with CF who could benefit, but for today I'm just going to enjoy the moment. Thank you, thank you, thank you!!!
+ Read More

£11,790 of £18,000 goal

Raised by 58 people in 13 days
Created June 4, 2019
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
PF
£100
Paul De Festa
2 hours ago
SC
£50
Stephen Cox
5 hours ago
£3,500
Anonymous
2 days ago
£100
Anonymous
4 days ago
JF
£25
Jack Feketie
5 days ago
£20
Anonymous
5 days ago
£20
Katy Athersuch
6 days ago
£50
Anonymous
6 days ago
JL
£50
James Lee
7 days ago
£10
Anonymous
7 days ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a £5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.