“I dream that one day Lottie will live an unrestricted life”

Our daughter Lottie has just turned 1 and is just the cutest little doll. She is so petite and still only in 3 to 6 month clothing. She is so happy, sociable and constantly smiling - she’s just the most laid back, placid wee baby there is! 

When Lottie was born she was in neo natal for two weeks but there was no mention of CF at that stage. A few days after she was discharged, I knew in my heart there was something wrong. I had planned to call the GP on the Monday morning but on the Friday before, our health visitor text me to say a doctor would be calling. When the doctor on the phone said she was coming out to our house my heart sank. 

She told us over the phone Lottie had CF but stressed she was on her way and not to Google anything. I knew very little about CF - I knew it had something to do with lungs and that was about it. Dr Laura sat with us well into the evening and brought Creon with her for Lottie to start immediately. We are beyond grateful for everything she did for us that day. 

I have an older child who doesn’t have CF so I can really see the difference in day to day life between him as a baby and Lottie. Lottie is on a lot of medication which she needs to take throughout the day, as well as needing physio for her chest and lungs. Currently I find daily life is filled with a lot more anxiety than the early days with her brother Leo, who, as a baby, we took to classes and groups. But with Lottie it’s the constant fear of what if she gets sick? 

I dream that someday Lottie will live an unrestricted life. Every parent wants their child to go and live their best life, and to think that Lottie will go through life with extra restrictions than others breaks my heart. I never want her to worry that catching a cold could mean a lengthy hospital stay. 

I think for Lottie’s dad and myself - and all the other parents out there - the dream is to see research of CF peak and eventually for a cure to be found. The advancements that have already been made are incredible and we are so grateful that Lottie’s diagnosis is nothing like what it would have been just a few years ago. 

Cystic Fibrosis Trust have been amazing! Nicola and Chloe from the Community Fundraising Team came to meet us last year and have since kept in touch with emails, birthday and Christmas cards. They have really made us feel like part of one big family and have reiterated so many times that if we need anything to always get in touch, which again we are so grateful for. The charity has been invaluable and knowing they are there when we need them is a huge weight off our shoulders. 

My advice for parents who have just received a new diagnosis is to take every day as it comes and slow down. When Lottie was diagnosed my mind was 100 miles an hour constantly; I cried every week at her hospital appointments and I genuinely never thought things would ever look up, but everything does fall into place. Our children are strong and resilient. You learn to adapt so quickly, and I can even go through a whole CF clinic without crying now! 

My other piece of advice would be to never stop asking questions, no matter how trivial you think they may be. The medical professionals are there for you as parents as well and if your local team offers psychology support then definitely take it - it’s helped me so much. 

A life unlimited to me is that one day Lottie won’t have her little bag of medications with her everywhere she goes. She will be free to live completely unrestricted and not held back by anything. To achieve this, the community must never stop fundraising. 

Originally, I wanted to do a fundraiser to keep occupy my mind with something else and channel my negative emotions into something positive, but by sharing our experiences, it also meant I was able to raise awareness of CF to people who maybe don’t know anything about it. It was also amazing to be able to give back to Cystic Fibrosis Trust, not only for being there for me and my family, but also for funding research that may one day lead to a cure for CF. That dream is incredible and something I will continue to fundraise for. 

If you’d like to unite with other parents of children with CF and fundraise for vital research and support services, then why not join the Circuits 4 CF team?

It’s simple and suitable for all abilities: complete a circuit of your choice – for example jumping, squatting, or lunging for 11 minutes a day from Friday 30 May to Friday 13 June and fundraise for a life unlimited by cystic fibrosis. 

To find out more and sign up, visit our Circuits 4 CF page. 

Sign up