On the 5th of November 2019, in a dark hospital room, with my 3 week old little boy in my arms, a doctor was telling us that our son had being diagnosed with a life reducing condition through the heal prick test, had a 30 year life expectancy, and our days would be rhymed by long physiotherapy sessions to keep his lungs working. This is how Cystic Fibrosis first invited itself into our life. 

We grieved the healthy baby we had been expecting, thinking of all these other parents who were filled with happiness and joy. Life seemed so unfair. But very quickly, we realised that this diagnosis was the richest life lesson we ever received. We had just turned 29, and here we were appreciating life for every moment, there was no time to lose looking at what we didn't have. We were just here, appreciating what we did have.

With both of us being healthy carriers - we were told that Cystic Fibrosis might not be a "one off" in our life.

Whilst Tom and I do not have Cystic Fibrosis (and will never have it), we both carry the affected gene - meaning that in each pregnancy, the risk of having a child with Cystic Fibrosis is 1 in 4. Not only this, but people with Cystic Fibrosis contaminate each other and if around one another, are at higher risk of having a reduced life expectancy. So having more than one child with Cystic Fibrosis would not only be challenging, but a risk to their health.

We dealt with this grief, and quickly realised that we had HOPE. We had hope as research was progressing fast. Kaftrio, an amazing new medication was in the picture. 

On the 8th of November 2020, after a long wait for genetic results, we recieved a difficult news, that our second child who I was 3 months pregnant of, also had Cystic Fibrosis. Our beautiful daughter was born and went through major surgery the second she was born, due to Cystic Fibrosis complications. For 17 hours, we had no certainty on whether she would survive. There are no words to write down the emotion when we found out that she was out the other side. She is a fighter, and she has outlblown everyone who has come accross her in difficult times.

On the 20th of January 2023 (a few days ago...), as I was about to step out for a quick lunch walk and enjoy some sunshine, I received an unexpected call from the genetics team. I am 2.5 months pregnant, and the CF testing was being carried-out - but we were told that results wouldn't be before mid-February. The phone call lasted half a minute. This baby had been diagnosed as having Cystic Fibrosis, there was nothing else to add. Yes, the wheel of luck hasn't turned much for us, but we don't control health.. And our children are so enriched from having sibllings.

When reading these lines, you will probably think that my life is awful. But we live SUCH a happpy life. Our days are tightly rhymed by physiotherapy sessions, which we do for about 2.5 hours a day (starting at 6am), strict hygiene rules as we bleach our home every day to kill bacteria, and we can't have a totaly normal social life with the risk of catching viruses. But our children wear their most beautiful smile everyday, and as a family, we are so thankful for every day we have together. We look at what we have, and not what we don't!

If you'd like to donate to keep our HOPES into how amazingly fast research is progressing, this is my fundraising page to donate to. I will be selling cakes at Danone on the 22nd of February (its a Huddle day). I will also be organising a cake sale at Square Works on the 23rd of Feb. For those who don't work at Danone or SquareWorks, I commit to bringing cake around in the coming weeks :)

The CF Trust does an amazing job at funding research, and life changing medication is been released quite recently. We can't WAIT for our children to access it when it is allowed for under 6s.

Thank you for your support <3

Saskia (I work in the FC team in Trowbridge for those who I haven't met!)