"We are so thankful for CF research developments. It brings so much hope to the CF community"

Our son is called Ruadhán and he is 7 months old. He was born with meconium ileus and had surgery when he was 2 days old, but we weren't able to get his CF diagnosis until he was 6 weeks old as one of his genes is very rare. We've been told he's only the 12th person worldwide with CF with this gene! He is the most special boy. He is so cheeky and has such a strong personality. He loves playing and listening to nursery rhymes.

Once we got his diagnosis, everything made sense

When we received his diagnosis, it was honestly a relief. He was failure to thrive and had all the signs of CF, we just didn't have a diagnosis. Once we got it, everything made sense. It was hard having this as the experience of our first baby, but we believe we were chosen as his parents for a reason. He needs us and we need him. He is the biggest blessing.  

We didn't have any knowledge of CF when we received Ruadhán’s diagnosis. My mum was a nurse and would've nursed CF kids years ago, when it was all different, so she took the diagnosis hard. The first thing we asked was “how long is my son going to live?” and just thought of the possibility we would outlive our son. I remember looking at him in his incubator and just wondering how his life will be and the things he might not be able to experience. 

CF affects him daily in many ways. He has thick secretions so requires daily physio treatments. Sometimes we do two treatments a day. He also takes Creon as he is pancreatic insufficient, so requires this for every feed. Due to his CF, I like to make sure I'm cleaning frequently so I have peace of mind everything is sanitised for him, which is tough for a teething baby who wants to eat everything! 

I hope he will see CF as just a tiny part of him

I know he will have a bright future. I hope he will see CF as a tiny part of him, amongst the many other amazing parts of his life. I already know he will take everything in his stride as he is so head strong already!

My hope is CF research continues to develop. I hope one day everyone in the CF community can benefit from modulators. We are so thankful for the research developments. It brings so much hope to the future for the CF community. 

Fundraising for a brighter future for everyone with CF

Running the Belfast Marathon Relay was an amazing experience. Ruadhán's dad and I had never challenged ourselves like that before. The atmosphere was amazing. The supporters really did push me on when I was struggling. It was a very emotional day for me as I felt I was doing it for Ruadhán, not only fundraising for research, but for awareness of of cystic fibrosis.  

Crossing the finish line with him was very emotional. I was struggling coming up to the end but when I saw him being held up it just motivated me to cross the finish line with him. He motivates and inspires me every day to be the best mum for him and to just keep going, so he needed to cross the line with me as I wouldn't have finished it without him! 

We were inspired to fundraise to help develop research. We also want to fundraise to raise awareness of the disease as when Ruadhán was first diagnosed, we had no idea what his life would be like. I try to post on social media about CF so other parents in our shoes who are scared and unsure about their baby's future, can see a snippet into our life and know that everything will be okay and you can get through this. 

My advice for other new parents is to take advantage of as much support as you can from friends, family, CF clinic resources, as well as information and guidance from the Trust. Never Google anything! Use information but don’t get too obsessed with it. It was consuming me until I realised CF is Ruadhán's journey, and to just be here for him. 

A life unlimited means to us that Ruadhán will live a full life and will not let CF hold him back. Yes, he will have challenges, but we are positive he will overcome everything thrown at him and will not let anything get in his way! He has already been through so much so I know he will continue to be strong and resilient throughout the rest of his life. 

Want to follow in Megan’s footsteps? Gather your friends, family or colleagues and take on a personal challenge, all while showing your support of those living with cystic fibrosis. Get in touch with our Community and Events Team to find out more. Email [email protected]. 

Follow Megan on TikTok @megangoodall5.