CF carers recognised at Windsor Castle event

Judith’s story

My son Dan has CF and turns 35 this month. When he was diagnosed, we were very worried about life expectancy, but I always knew medical advances would come along in later years. As parents, it meant that our job was to keep him as well as we possibly could. Lots of people would think he looks fine, but they don’t know the full extent of his treatments and how much hard work there is behind the scenes to keep him well. CF is constantly there.

Before we had Dan, I knew a little bit about CF because someone I knew had a daughter with the condition. We were in denial a bit at first, as he also had bilateral talipes, and as first-time parents we couldn’t believe it, and it felt like there was a lot of things we had to start doing straight away. I’ll always remember the GP said: the sooner you come to terms with it, the better.

I’ve been very grateful to have a great support network from my family, and also from the Trust. Sangeeta, a Welfare Rights Advisor, has supported us through a number of things like applying for Personal Independence Payment (PIP). Dan also has regular visits to the Heartlands Hospital who provide excellent care and support. All of these factors together help contribute to Dan’s wellbeing.

How was the event?

I work in a school and everyone had been asking me whether I was getting excited for the day, but to be honest I couldn’t, because this sort of thing doesn’t happen to people like me. I was introduced to Jemma prior to the event and we hit it off straight away, both sharing a common interest. It’s been nice as we have stayed in contact with each other. 

Walking into that room at the castle is a memory that will stay with me for a really long time. It was an honour to meet King Charles, and as Patron of the Trust he was extremely knowledgeable about CF and the challenges it brings. The King made the experience very personal by asking how Dan was doing.

My husband, son, our dog, my sister, and her husband all came down to support me – we made a break of it. They all watched me go in and it was nice to know they were waiting for me.  The next day we went round the rest of the castle, and I couldn’t believe I’d been in there the night before.

I went shopping on Monday and bumped into the deputy head of the school. He said “sorry, I’ve got to bow to you now!” which made me laugh. But you don’t often meet people who have met The King!

The whole thing has made me feel really humble, and being recognised for it is incredible, but I didn’t expect it! Everything I’ve done, I’ve done for my son.

Jemma’s story

I have four children. My eldest is 18, then I have a nine year old daughter and two two-year-old twins. Nellie has CF, and Sylvie doesn’t even carry the gene. Though, funnily enough, Sylvie is often the one who is poorly!

My friend’s sister had CF, so I had heard of it before, but didn’t know all the ins and outs of it. At first, Nellie’s diagnosis wasn’t really a shock because I knew something wasn’t right. An earlier scan showed that she had a blocked bowel, and though it went away on later scans, I knew something was off. She then started losing weight so when they diagnosed her CF, I was just grateful to have gotten to the bottom of what was going on. 

It’s hard having twins anyway, but I’m lucky to be really close to the hospital, so it’s nice to know they’re so close if I ever need them. I’m also grateful to Sangeeta from the Trust who helped me with the Disability Living Allowance (DLA) form. It is a lot of work fitting in physio, getting my daughter to school, and giving her all the medication, on top of everything else. Nellie hasn’t needed any more antibiotics since she started Orkambi, and now she is on Kaftrio. She is so good that sometimes I forget she has CF, and I try not to think about it when she’s well. 

Tell us about the event

It was incredible. I was looking around at all these famous faces and I couldn’t believe I was there. I met up with Judith before the event and we walked to the castle together. We spoke to Kate Garroway and Coleen Rooney, and I saw the Prime Minister. It was amazing chatting to all the other people about why they were there and who they were representing.

When I spoke to King Charles, he told me that he was Cystic Fibrosis Trust’s Patron, and shook my hand. It seems surreal to me that that even happened. Windsor Castle was so beautiful as well – it was a room they have banquets in so it was huge, and there were so many people.

I really enjoyed meeting Judith as well. Treatments have changed so much since her son was diagnosed and it was interesting comparing our experiences. Her son is so loved by her, and she has done so much for him, it was really inspiring. We’re hoping to meet up again soon so I can show her round London! 

Jess’s story 

My three year old boy, Leo, has CF. He was diagnosed with the heel prick test, and ever since then I’ve been working with the Trust. I’m the least sporty person in the world, but I’ve done a marathon, and even a triathlon. 

Leo is doing well now but he was in and out of hospital up to the age of two. Since starting Kaftrio, he’s been doing a lot better and his confidence is through the roof.

He’s such a sparkly child. He’s kind, considerate, and in some ways I think CF is his superpower. He has an older brother called Max who doesn’t have CF, and the two of them are wild and hilarious and brilliant together.

How was the event?

It’s something I never thought would happen in a million years. I’ll never forget my husband’s face, walking round the corner in our house with two invitations.

Everyone there was really lovely and the whole event gave us both such a feeling of thanks. 

The highlight was speaking to The King, and hearing how much he knew about the Trust. Everyone there was representing a different charity but he knew so much about cystic fibrosis, and the progress that’s been made over the last few years. He even said to send his very best to Leo.

When Leo was diagnosed, it was the worst thing ever, and now he’s living a normal, healthy life, and The King is sending him his best! It was a massive reminder of how much Leo has enriched our lives.

The day after, I sent Leo’s nursey some photos and he did a presentation to his class about how proud he was. It’s a day we’ll never forget.