When Chester was diagnosed and I became a CF mum, I became part of a much bigger family, a family of strangers forged together by a common enemy, Cystic Fibrosis.
We are a family that for the most will never meet and our children will never play together. We may be a relatively small community in the scheme of things, but this does not deter us, though we may be small we are proving to have a huge voice!
As a family we know the highs and lows, we live them too, we know the heartbreak and sadness that each of us has gone through and continue to go through daily. We know the pain, the torment and the guilt, we’ve probably all felt it at one time or another.
We are there for each other no matter what the time of day or night, we standby each other ready to pick up those who fall, with kind words, optimism and advice, always virtual counsellor ready at the press of a key. We are there for each other when our children are sick, to offer comfort, sometimes in the darkest of hours and we are there to rejoice in others good fortune, because that’s what this family does!
We have determination like no other, taking on challenge after challenge in our children’s names, finding strength each time to continue because we know our children have no choice than to get on with it. We dig deep to find the strength to take on the biggest of battles and we have the will, to want, to win and we do all this side by side, together every step of the way.
This community has been waiting for something special, for something to change CF, some have already waited too long already, so to be told that something is “Too expensive” and “Not cost effective” just isn’t going to work, you won’t be surprised to hear that we aren’t prepared to take that as an answer.
We have united in our fight for access to Orkambi, and we won’t rest until the negotiations start and a deal is struck, we are shouting louder than we ever have before and we are going to be heard!
Seeing this amazing team ethos and concerted effort by all those affected by CF and their friends and families has made me proud to be a CF mum and has restored my faith in humankind, that even when people are at their busiest in life, they can take two minutes out of their day to support our quest to get Orkambi for our children.
Like Chester there are many people in the CF community that possibly won’t benefit from Orkambi, but to us that doesn’t matter, we are family and we fight for all our children, one in all in!
It’s a fact that Orkambi is been proven to slow lung function decline and reduce exacerbations and is the first drug to actually treat the root cause of CF instead of treating the symptoms, this is a huge breakthrough and has bought much hope for people throughout this family. It’s approval also paves the way for future pipeline deals for other medications compatible for other mutations which essentially means one day Chester could get his cure.
All we want is for our children to get what they need, they didn’t ask for CF and fighting for them is all we can do. These beautiful children deserve to live their lives free from hospital admissions and from hours of physiotherapy and they sure as hell deserve to be heard and we will make sure they are!
Becoming a CF mum was never my choice, given the option I would never want to be a CF mum, but I am and for now I can’t change that.
One thing is for sure, that for a condition that can at times be isolating and lonely, I’ve never felt so surrounded by such wonderful people.