“The battle now is to make sure everyone can get the same amazing effect that the drugs have had for Isabelle”: Beth and Andy share Isabelle’s story and their fundraising journey

How was Isabelle diagnosed?

Beth: I’m a nurse, was a first time mum, and was working in intensive care. Isabelle missed out on early testing and was failing to thrive. Despite being a nurse, I didn’t know a lot about CF as I hadn’t seen it where I was. It was actually one of my colleagues who first mentioned it to me. 

We really had to jump through hoops to get a diagnosis, and we were back and forth with doctors. She was underweight, had a distended abdomen, was coughing frequently, vomiting, and was producing a lot of mucus. Eventually she had to go to A&E with pneumonia, and was discharged after a few days of antibiotics. I asked them what the plan was, and they agreed to do a sweat test. They tried, but they couldn’t get enough sweat (this was in July 2007), and said they would leave her until October before trying again. I couldn’t let it go on for that long so I waited to make sure they had enough sweat, and two weeks later we got the results at the start of August 2007.

What inspired you to start campaigning?

Beth: We were inspired to start campaigning because Isabelle’s treatment burden was high, and we saw the toll this was taking on her. She was taking a nebuliser nine times a day, was on IVs every 8 to 12 weeks, and was having a very rough time. By the time she was about 13 or 14, and hadn’t started the modulators yet, she’d given up on herself a bit. She could Google and knew about the life-limiting aspect of CF. She’d lost interest in school and didn’t see the point. We tried to push her to stay strong until we got the drugs. We knew things would change.

When we got the news that the medication had been approved, I recorded a video which went viral on Twitter and it blew up from  there. We were in a lot of newspapers, and on the news, and were  invited to No. 10 to meet Matt Hancock and Boris Johnson. Then, a year later, Kaftrio came along. At the time it was all a bit hectic. My phone was going off and we had loads of people phoning and asking to come to my house and go on the telly.  

Why do you want to raise awareness of access to medicines for everyone with CF?

Beth: We want to start doing more again to reboot our campaign and raise awareness for others. We were always very vocal but we’ve taken a bit of a breather and step back to enjoy having a well child. It’s lovely to see her doing everything her peers are doing and not having to do IVs every week. But even though we have Kaftrio, there are so many that can’t, and now we’ve seen how amazing it has been for Isabelle, we want that for everyone.

Tell us a bit about the #buspass4CF fundraising challenge!

Andy: The idea for my first bus trip challenge came after I realised I lived at the furthest point from the sea - it’s about 70 miles to the coast in any direction. I set myself the challenge of getting to Land’s End on bus, using just my free bus pass, and raised money for Stoke hospital. It took me 4 days. It’s been a few years now, so I’m going to go the other way and get as close to the Scottish border as I can where my bus pass is still valid. I’m going from Burton-upon-Trent to Berwick-upon-Tweed. 

I’m going to start on 5 August, go home for the rest of the weekend, then pick up the journey from 7 to 9 August. I should get to Bridlington on Monday, Newcastle on Tuesday, and Berwick on Wednesday afternoon, then it’s 1 mile walk to get to the sea. After that, I’ll just get the train home. Last time I only missed one bus and had to sit around for 2 hours, so I’m hoping I don’t have a repeat of that!

I’ve got my yellow hoodie with all the fundraising info on, and am bringing a Pluto toy with me that Isabelle has had since she was a child. Last time I brought a space hopper which was a conversation starter, so I hope this is the same. After everything that has gone on over the last few years, raising awareness is what I’m passionate about.