“My hope is that everyone with CF can follow their dreams and live without limits”

Jakub was born in May 2021, right in the middle of the pandemic, and he’s my first baby. Just four days after he was born, we were given the diagnosis of cystic fibrosis (CF). Even though we had known there was a risk during pregnancy, we were still hoping he wouldn’t have it, so it came as a real shock. 

We had to return to the hospital for tests and be introduced to medication and physiotherapy. At first Jakub had percussion physio, then he moved on to exercise and trampoline play, and now he uses vibration PEP (a type of airway clearance) alongside exercise. In terms of medication, he takes Creon, vitamins, and Kaftrio. Thankfully, he manages CF really well. Today, he’s thriving, enjoying school, and even takes martial arts lessons. 

Planning is everything when it comes to CF. We have strict routines every morning and night with medication and physio, and whenever we travel, we have to plan around meals, medication schedules, and even check where the nearest hospitals are. It can get tricky, especially with time changes when travelling abroad, but organisation is the key to less stress. 

CF at Christmas time 

Jakub picked up an infection one year and had to be admitted to hospital just before Christmas. The doctors reassured us he would be home in time, but it was still such a tough moment for us as a family. The hardest part was feeling like we were missing out – decorating the house, preparing food, and planning to see family. There was even the worry that we wouldn’t be together at all. Luckily, he was discharged in time with just oral antibiotics, and we got to spend Christmas at home. 

My main worry over the festive season is the risk of Jakub catching bugs or colds when we’re socialising. It’s especially tough at Christmas when people are gathering indoors. Another challenge is gifts – sometimes people buy things that aren’t really safe for him, like bath toys with holes that trap bacteria, or fluffy toys that collect dust and are hard to clean. These are things many people don’t think about, but they’re really important for us. 

This year, we’ll spend Christmas at home with family. Then, between Christmas and New Year, we’re planning to travel to Poland to visit relatives and rest. My dream would be to travel to Lapland – to see Santa, go reindeer hunting, stay in an igloo, and watch the northern lights. That would feel like a truly magical Christmas! 

Supporting Cystic Fibrosis Trust changes lives 

Cystic Fibrosis Trust does so much for the CF community. Without their work, we wouldn’t have access to modulators like Kaftrio, and the research they fund is vital in moving us closer to a cure. Supporting them really does change lives. 

They’ve helped us in really practical ways. For example, they supported me with filling out a DLA form after it was rejected the first time, and they also provided a grant for new appliances when we had to move house in an emergency. Their support has made a huge difference. 

For me, a life unlimited means being able to live life fully, without health holding you back. For everyone to have the chance to make their own choices, follow their dreams, and live without limits – that’s what I want for Jakub, and for everyone with CF. 

With your support this Christmas, we can fund the revolutionary research that can help turn worry into wonder for everyone with cystic fibrosis.  

Donate now