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"CF is a part of Zara’s and our lives, but we won’t let it solely be our lives": Fiona's story
Initial diagnosis
Zara was diagnosed with CF when she was 18 days old. Our GP arrived, unannounced, at our house to tell us Zara’s heel prick test had shown it was almost certain she had CF. My husband and I had no knowledge of the condition or what it would entail, so this news was scary and completely floored us. Our GP advised us not to search online for any information and to only read the Cystic Fibrosis Trust booklet provided for new parents with a diagnosis. This advice was invaluable, and it was particularly comforting, during a devastating time, to read stories of fellow parents’ experiences with CF and to read and appreciate their positive outlook on their child’s future.
Zara was given a hospital appointment for the next day to meet the CF team. The time spent waiting for the hospital appointment was tough. I kept hoping that maybe the blood test had been incorrect, and we would be told it was all an unfortunate mistake. However, tests carried out at the hospital confirmed the diagnosis. My husband and I were all over the place and to go to the hospital we threw any clothes on Zara just to make sure she was wrapped up. We have some photographs of said outfit which now always make us laugh. It makes me really happy we have a funny memory of such a tough day.
Establishing a routine
CF does have its challenges and does impact on family life, but as Zara is our first child, my husband and I have said from the beginning that we don’t know any different, so physio, medication, fat content of her food, etc. is normal for us. CF is a 24/7 condition and there are no days off. We always have to be organised and follow a routine to ensure we fit all medication and physio into the day, around food and naps.
When we received Zara’s diagnosis, I spent a lot of time on the Trust website to try and gain an understanding of what CF is and what help and guidance is available. Seeing the work the Trust were doing to help those living with the condition, as well as their families, inspired me to try and help to raise essential funds.
Fiona
Fundraising
So far, I have organised two fundraisers for the Trust. In May, I walked 5km a day for the full month. At this time, I was still getting my head around Zara’s diagnosis and felt I was spending too much time worrying about all the negatives associated with CF. Deciding to focus on fundraising, which would also get me out the house every day, benefitting my own mental health, allowed me to raise over £1,000.
I also organised a Christmas raffle, through my baking business, Fi’s Fancies, which raised over £3,000. I contacted a number of local and national businesses and due to their generosity, I received over 100 prizes. As an added bonus, with so many businesses involved I was able to raise even more awareness of CF through their social media channels. It felt amazing raising such a great amount for the Trust as it provides much need support to those affected by CF.
Support from the Trust
For my husband and I, the Trust is a one-stop shop for all information about CF. It gives us hope for an improved future for Zara. We feel part of a community, knowing we don’t have to deal with this alone, and it’s nice to get to know others supporting the same charity. The Trust's vision that everyone with CF can live a life unlimited means everything to us. We want Zara to be able to experience life the same as everyone else, seizing as many opportunities as possible.
It’s vital to raise awareness of CF and what it entails. My husband and I knew very little, if anything, about CF before Zara’s diagnosis, which was the same with friends and family. Helping people understand more about CF has made me passionate to continue to fundraise and raise awareness of the condition.
Looking to the future
My advice for new parents with a child living with CF would be to try and not be too worried about the future and to not let CF consume you. It’s only a part of your life. Be open and speak to friends and family. Use the the Trust booklets - they help me massively, especially reading experiences from other parents of children with CF or adults with CF. Ask your CF team as many questions as you need to, however silly you think they are. It takes a while to get used to CF and we still have lots to learn, but your team are there to help you so don’t be afraid to reach out.
CF is a part of Zara’s and our lives, but we won’t let it solely be our lives. We want Zara to grow up and be able to achieve her goals like her peers, and experience life to the full.
FeBREWary is back for 2022!
FeBREWary is an opportunity to come together in person or virtually, with your friends, family or work colleagues. Why not have a brew and a slice of cake, raise vital funds, and help make sure children with CF like Zara can live a life unlimited.
If you’re taking part in FeBREWary and looking for some cake inspiration, Fiona, who runs her own baking business, has kindly provided a recipe for a ‘No Bake White Chocolate & Lotus Crispy Slice’.
Give it a try and don't forget to tag us in any pictures on social media @cftrustuk.
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