“Our hope for our boys’ future is that CF does not define them”: Mum Rebecca shares her festive wish

Marcus and Zander can both be described as big balls of energy! They are both non-stop and constantly on the go. Marcus loves playing football and is starting to enjoy watching too, although he supports Manchester United and Rangers so that enthusiasm may not last long! 

He’s a great big brother, very kind and considerate, and despite the age gap, the boys have a fantastic relationship. They love being together and we always catch them hysterically laughing at each other and playing nicely together which we are enjoying while it lasts!

Zander is such a little character; he can say so much without actually being able to talk yet. He is turning into quite the little escape artist now he has started being able to open doors and get out of his highchair. His favourite activity is emptying all the kitchen cupboards; watching us tidy everything up for him to pull everything out again! He is definitely cheeky, but such a loving, funny little man.

We were devastated, but it became our new normal

When we received Marcus’s diagnosis it was devastating. That joy of having a new baby seemed to fade. We just couldn’t see past the life expectancy. Bringing a newborn baby into the world is such an adjustment and time of high emotion anyway, so to also receive this diagnosis and have no time to really digest it before cracking on with all these medications and physio etc. was really tough.  

However, things slowly got easier and it became our new normal. With Zander, we knew it could be a possibility so made the decision to find out while I was pregnant. We hoped by doing this we could then be prepared but it also meant we could just live in our little baby bubble once he arrived without the looming dread of a diagnosis.  

Although we knew there was a 25% chance of this baby having CF, when it was confirmed it still came as a shock and there was a lot tears. I think it just felt cruel that this was happening to us again. But we soon snapped out of that and looked forward to our new arrival.  

Planning is key when living with CF

Both boys have adapted so well to living with CF. They both take a number of medications morning and night which they have always been amazing at doing. They take medication throughout the day with meals and snacks. They also have a daily physio routine. Marcus’s school are really great and fit some of his physio into his school day.  

Planning is key when living with a condition like this, you have to make sure there is enough time in the day to fit in physio, make sure we always have enough medication, and we always have some Creon with us.  

We hope CF will never define them

Our hope for our boys’ future is that their condition does not define them and does not stop them living the life they want to lead, whether that is to become a footballer or a solicitor, or become fathers if that is their wish.

Our Christmas wish would be for good health and that we can all spend it together. For the wider CF community, it would be continued advancement in treatments for those living with CF, especially those unable to benefit from modulators.  

Support from the Trust

The Trust were a wealth of knowledge for us as we navigated our way through diagnosis. Everyone pointed us to the Cystic Fibrosis Trust website for any information, especially healthcare professionals. We also directed our friends and family to the website, so we weren’t having to constantly explain the condition ourselves. 

We have also been lucky enough to receive an emergency grant for a lengthy hospital stay which was so helpful. You don’t appreciate until you’re in that situation just how expensive things can be when you’re there, so this really made a massive difference for us and we were so grateful.

It will take time to adjust but things will get easier

My advice for other parents is that although it is likely to be a huge shock which can consume you, still try and enjoy the baby stage, they aren’t babies for long! Take things one day at a time, it will take time to adjust and that’s okay, but things will get easier. Accept any help that is offered from those around you; it’s easy to just go into survival mode but you need to look after yourself too!