Ayda’s story: "Kaftrio was a light at the end of the tunnel"
Ayda is seven years old (coming on 17, it feels like sometimes!). She is a really sociable little girl who loves being around her friends and family. She’s been really excited about starting back at school this term and has even persuaded Jess, her CF nurse, to come into school and talk about CF to her teachers and classmates. This will help them to understand more about the medicines she takes at school, and why she sometimes can’t take part in certain activities or has time off to go to the hospital.
Ayda’s CF diagnosis
When Ayda was born, she had a condition called Hirschsprung’s Disease which is a chronic bowel condition. She spent her first weeks in hospital awaiting surgery to remove the affected parts of her bowel, so we were already in the hospital when we were given the news she had CF. I will never forget the moment. We were called to a meeting with Ayda’s consultant, which we thought was to discuss Ayda’s surgery, but on arrival some people from the CF team were there to greet us too.
I can remember clearly the feeling of helplessness, hopelessness, sadness and sheer terror as we got the news that she had cystic fibrosis. Credit to Ayda’s CF team and her consultants, they explained things really well and reassured us that we can get through it. To see how much support there was out there for Ayda was very comforting, as was the news that new medicines to treat the condition were on the horizon.
Kaftrio was a light at the end of the tunnel
Knowing that Ayda would be able to benefit from Orkambi, and later on Kaftrio, was an absolute lifeline for us as a family. It gave us hope and was the driving factor in being so relentless with her treatments to try and keep her lungs and body in the best shape possible until the medicines were approved and available. It was a light at the end of the tunnel.
There were, however, a few years of absolute despair when the medicines were approved but not made available on the NHS. It was at this point that I learned, along with Ayda and her brother, how to become a campaigner and fight for the vital medicines Ayda needed. We started by signing petitions already in place from the amazing people in the CF community. We contacted local papers and MPs sharing our story and the position we and thousands of other parents and children with CF were in. One paper in particular, The Daily Express, took up our fight and Ayda became one of the poster girls for the campaign. It led us to a debate in Westminster where I was able to meet Trust Chief Executive David Ramsden and other members of the team.
Eventually, following countless ups and downs, TV interviews, newspaper articles and some amazing work by the CF community, the news came that we had done it, and Orkambi was available! It was a massive achievement by the CF community and Cystic Fibrosis Trust - and what a bright future it has created for people with CF like Ayda.
It feels like we have gone from fighting the disease with our bare hands, to now having a sword, shield and full set of armour. We know the war has not yet been won in regard to CF but many more battles are certainly being won now because of these precision medicines available.Dave
We have been lucky that Ayda has remained, on the whole, very healthy in her seven years. We have had only one admission to hospital so far, and I’m certain this is due to Ayda starting Orkambi and moving onto Kaftrio at the earliest opportunity. Since starting the medicines, Ayda has seen a huge boost to her weight, she has colour in her face and an increase in energy and endurance. She is able to concentrate much better and is becoming fatigued much less at school and in everyday activities.
It feels like we have gone from fighting the disease with our bare hands, to now having a sword, shield and full set of armour. We know the war has not yet been won in regard to CF but many more battles are certainly being won now because of these precision medicines available. Kaftrio gives us confidence in her long-term health which is a heavy burden lightened. The prospect of less hospital admissions and a longer, healthier life for Ayda is very comforting.
Navigating life with CF
After seven years, CF and its many daily routines have become normal to us. The medicines, the physio, the clinics, the constant ‘err’ on the side of caution have become second nature to us as parents. It’s only really when you’re taken out of the daily family situation, say for a work trip away, or a city break without the kids, that you realise CF is actually a huge daily task which takes a lot of time, patience, management (and constant worry) to deal with! It is in those moments I think you have to allow yourself a pat on the back for your constant efforts as a parent and carer, and more importantly, appreciate Ayda even more for what she achieves each day.
Hopes for the future: A life unlimited
My hope for Ayda’s future is that she will be able to achieve whatever it is that she decides to pursue in life, in the happiest way possible. I hope she can achieve her goals and not be held back by her condition. A true life unlimited means to me that Ayda could undertake any task or activity she wanted without having to stop and think about what drawbacks it may or may not have on her CF. These precision medicines are pointing us in the right direction but there is still a way to travel.
Thank you so much to Dave for sharing Ayda’s story. You can read more about the Kaftrio campaign and the difference it has made for people with CF in our latest annual report.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
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