“We work hard to support Cystic Fibrosis Trust as they work hard to support us”

Phoebe is the funniest, sweetest, most determined little lady I have ever met. She brings smiles to everybody’s faces and always has a cheeky smile on her face too. 

Coming to terms with Phoebe’s diagnosis

Phoebe’s diagnosis was a little different from most. Her screening test from her heel prick test came back with the indication of CF so we were sent to the Royal London Hospital for a sweat test. Phoebe’s test didn’t give us a clear outline of what was to come, as her result was in the 40s. The normal range for a sweat chloride is 0-30, and anything above 60 is a clear-cut CF diagnosis. With this in mind, Phoebe got a label of ‘CFSPID’ (cystic fibrosis screening positive inconclusive diagnosis).

This was really difficult as we didn’t know how to act. We were told to act as if she was any other ordinary baby, but on the other hand given all this information about this scary condition that she might have. 

After some more research into her gene make-up, and starting to show some characteristics of cystic fibrosis, Phoebe got her official diagnosis when she was around seven months old. 

It has taken a long time to come to terms with it. I openly admit that I struggled with anxiety when it came to Phoebe’s initial diagnosis. Even finding it hard to leave the house through fear of germs. For the first year of her life I found it difficult, but it slowly became more manageable. We have found a comfortable medium with what we allow her to participate in; weighing up the risk to her health and letting her live a ‘normal’ 2-year-old’s life. 

But to anybody reading this with a new baby and a CF diagnosis, I would say do what makes you feel comfortable and be selfish! Your friends and family will understand and it WILL get easier! 

Day to day life with cystic fibrosis

I found it really difficult deciding to send Phoebe to pre-school, but with all the decisions we have made for her, it’s made with the view of not holding her back. Our local pre-school is absolutely amazing. After an educational visit from our CF nurse, they have adapted to make sure Phoebe’s environment is as safe as I would make it at home. Play-Doh is made fresh each day she goes, there is no mud kitchen, no sand table, and waterplay is refreshed multiple times a day. They even have a little trampoline which they do some physio with her on, combined with blowing bubbles.

We have had five weeks in total at the Royal London Hospital, but she takes everything in her stride and honestly, I think we find it more traumatic than she does! Luke and I know where each other struggle with her hospital stays so we support each other. It’s important we take care of ourselves so we can best care for her. 

Overall, Phoebe has had a lot of antibiotics, not often going more than a couple of weeks between courses. In her consultant’s words “Phoebe has had more than the average amount of chest infections” so we have been trying to figure out why. In addition to CF, Phoebe also silently aspirates, so needs thickened fluids to ensure her swallow is safe. We also discovered mild Tracheomalacia which we are trying to improve with physio. 

Phoebe’s physio consists of nebulisers, PEP, jumping on the trampoline and blowing bubbles through a straw. Phoebe’s current medication load is 13 pills a day, plus around 7-10 Creon capsules, and she swallows them better than either me or Luke can! But she has finally started on Kaftrio, so we are hoping that things are going to settle down now for her. 

Fundraising for Cystic Fibrosis Trust

We host quite a few charity bits throughout the year, including a bingo night, a family fun day and our eldest daughter’s primary school take part in Wear Yellow Day. For FeBrewary, we teamed up with our local pub, The Queens Head in Colchester. They provided all of the coffee and cake, and donated £1.50 for every cake sold. It was such a great turn out and we raised just under £165! With the support of our local village, we aim to raise £7,500 this year. 

We work hard to support Cystic Fibrosis Trust as they work hard to support us. The invaluable information and support online, and of course the life changing research they do, means so much. I for one won’t stop fundraising until we find a cure. 

My hopes for Phoebe’s future are the same as they are for my eldest daughter: that she gets to live a long, happy and healthy life. And I won’t stop fundraising until that’s guaranteed.