On behalf of all of my family, I just wanted to send a massive thank you to all of you lovely lot who signed the petition when I initially posted this discussion.
The Cystic Fibrosis Trust has just announced that the NHS, NICE and Vertex have reached a commercial agreement to keep the drug Kaftrio on the NHS list.
This is obviously amazing news for us as a family and also for the young babies being born, like Archie, with this condition.
England can go and get pegged five zero tonight for all I care!
Speaking for myself, you should feel free to take a bow, instead of thanking us, without yourself and others affected taking up the fight, nothing would have happened.
On the back of the incredible news which the family received regarding the drug for our son Archie, which has been permanently approved on the NHS in the UK, I wanted to do a good deed. I would like to raise money and awareness to support the endless, fantastic work which the Cystic Fibrosis Trust does to support patients and closely affected family members who live with this condition.
Therefore I am running the London Royal Parks Half Marathon on the 13th October.
Any small contribution which you can donate would be greatly appreciated by firstly myself and secondly all of my family. The JustGiving link is at the bottom of this email.
I would like to take this opportunity once again to thank all of you who have given me overwhelming support and kind words since I broke the news. I really am forever grateful to all of you!
Comments
On behalf of all of my family, I just wanted to send a massive thank you to all of you lovely lot who signed the petition when I initially posted this discussion.
England can go and get pegged five zero tonight for all I care!
The good old NHS comes up trumps again !
Superb!
What a beautiful photo of Archie. He has a lovely smile.
You absolute superstar 🤩🥰❤️