We welcomed our first baby- Ruadhán McGurk to the world on the 17th October 2024. When he was born, we noticed he stopped taking feeds and was unable to make a bowel movement. It was found that there was a blockage in Ruadhan’s bowel which required surgery when he was 2 days old to repair this blockage, called meconium ileus. He had 20cm of his bowel removed and spent 10 days in intensive care in the Royal Hospital in Belfast.

This blockage was the first symptom of cystic fibrosis.

Ruadhán has spent more weeks in hospital until we were able to start the cystic fibrosis medication and obtain our diagnosis through a sweat test when he was 5 weeks old.

Cystic fibrosis causes the body to produce thick mucus which affects lungs and digestive system mainly. We have to do daily chest physio on Ruadhán to help clear the mucus in his lungs to prevent infection as several lung infections can cause lung damage. We also complete pep mask physio where Ruadhán breathes in a salt solution to help thin the mucus and make it easier for him to swallow or pass.

Cystic fibrosis also affects Ruadhán’s digestive system. He is currently pancreatic insufficient so he is unable to digest foods properly. Ruadhán needs to take medication before he eats anything so he can digest his food properly. Before we began this mediation, Ruadhán was losing weight daily and was ‘failure to thrive’ due to his pancreas being unable to digest food, and instead was passing out all the nutrients instead of absorbing them.

Myself and my partner had no idea we carried the CF gene until Ruadhán was born, and was diagnosed with cystic fibrosis. 1 in 25 people carry the CF gene.

From then, our lives have completely changed. Our first baby experience is not like the typical persons. We start our day with physio treatments on Ruadhán, as well as preparing and giving medication throughout the day and ending the day with more treatments. These medications and treatments will continue for the rest of Ruadhán’s life.

Thankfully, due to the genes Ruadhán has, he is eligible for a modulator therapy drug when he is 2 years old which will be life changing. We are so thankful this option is available to Ruadhán.

There is currently ongoing research into other modulator therapies which would allow for other people with cystic fibrosis genes to obtain these treatments aswell.

Without visability and funding, there is no research into these medications.

We are hoping the current research could mean that these drugs will be more readily available to the whole CF community.

Myself and Ruadhán’s dad, as well as other family members are taking part in the relay in the May Day marathon on the 4th May 2025 to raise money for the Cystic Fibrosis Trust. The CF Trust has supported people with cystic fibrosis from 1964 to live longer, healthier lives instead of shortening and damaging lives of those with the disease.

Any donations would be appreciated to try raise money and awareness for the cystic fibrosis trust to allow for more research and a brighter future for our wee man and the rest of the CF community ♥️

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Cystic fibrosis comes with challenges, affecting our physical health, mental wellbeing and how we choose to live our lives. But our community is uniting towards the ultimate goal of effective treatment for all.

Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis.