"My hope for the future is to watch Katy live a long and healthy life": Stacey reacts to the Kaftrio news

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Following the exciting announcement that the life-changing CF drug, Kaftrio, has been approved for use across the UK for 6 to 11 year olds, we caught up with Stacey, whose eight-year-old daughter Katy has CF, to find out about the difference this could make to Katy’s future. 

Dealing with CF as a family

A photo of 8 year old KatyMy daughter Katy is 8-years-old. She loves gaming, Minecraft and playing football – in fact, she wants to be footballer when she’s older.  

Katy was diagnosed with cystic fibrosis (CF) at 18 days old; we’d never heard of CF when the doctor told us the news. CF has a big impact on our day-to-day life: we must plan life to the letter as CF can affect things like days trips, school trips and holidays. We always make sure Katy can have regular toilet breaks, we plan whether we will be eating out to make sure we have Creon with us, and we avoid visiting certain places due to the nature of the attraction.

Katy has regular treatments throughout the day, so we have to ensure we can fit these in too. She is currently on two nebulisers a day, which increases to three or four when she is symptomatic. In addition, she has airways clearance after the nebuliser, as well as extra sports to keep her fit. She plays football for her local team, swims with school and loves to ride her bike. She takes antibiotics when necessary, vitamin tablets, a nasal spray and salt tablets in the summer. 

She often has to miss events to attend hospital appointments and is getting to the age where these events are a big deal for her, so we try to work around them whenever possible. 

Our hopes for the future

We were thrilled to hear the news about Kaftrio as it means Katy’s future could change. It could mean fewer tests and hospital appointments, and I know she would love to be able to reduce how much Creon she must take, or even not take it at all.

Katy suffers with needle phobias, so annual reviews and blood tests take months of preparation with the psychologist. This is exhausting for her and emotionally exhausting for us to watch her go through it. I hope and pray that Kaftrio can grant her wish of gaining weight and reducing Creon, so she won't have to worry about needles so much.

Although we know life expectancy for people with CF is getting higher each year, Kaftrio means that we can really dream of Katy becoming a mummy and having a family of her own. My hopes for the future are to watch Katy live a long and healthy life and not miss a single event in life, as that’s what she deserves. I want her to be able to share memories with her brother and sister that don’t involve lots of hospital stays, meds and physiotherapy.

My advice to other families

My number one piece of advice is not to Google a single thing. Instead, I went straight to the Trust’s website. This is where I read up on the condition and other family’s stories and experiences of CF. I was also able to signpost family to the website so they could understand CF too. 

I’d also encourage you to get involved with CF communities online or locally. Speak to other parents who understand what CF means for your family, and if you don't understand anything or don't agree with anything, always question it – the CF teams are amazing and always happy to answer your questions.

While this is a good day, Kaftrio is not a cure, and sadly, will not work for every child. Cystic Fibrosis Trust won’t stop until everyone with CF has access to the support and treatments they need.  

If you have questions about Kaftrio, you can get in touch with our Helpline by emailing [email protected] or calling 0300 373 1000 or 020 3795 2184. You can also speak to your CF team. 

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Our Helpline

Our Helpline is available to anyone looking for information or support with any aspect of cystic fibrosis, a listening ear, or just to talk things through. Our friendly team are here if you need us. 

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