On average, Trikafta has been seen to increase lung function by 18%. That doesn’t sound like a lot, but if it maintains that increase in people with progressed disease, like Mary, that might prolong that time before needing a lung transplant, for, who knows how long? And for children without progressed disease, it might mean that they never reach the point of progressed lung disease at all.
As I have said before, this generation of drugs will not (sadly) work for Isaac. These drugs fix a protein fault, but in his mutation, that protein is never formed in the first place... nonetheless, it brings us much hope, and for the 90% of people with CF that these drugs do work for, it really is life changing. Babies born today, with these more common mutations, may never know a life like Isaac has. This brings us much joy.
So to all of you who have donated to CF research, thank you, and please don’t stop giving until these kind of treatments are available to everyone with CF. A worry of ours is that the big pharma’s will be less interested now - so our fight continues.
New Year pictures (theme this year; pub names).
Thank you to all our family and friends, we love you so much x x x
