“I just want to let the other dads know that it's tough to start with, but it gets better”

Hi, I'm Max, I’m 33 and work in the offshore oil and gas industry - I'm a First Officer on a drill ship and travel around the world for work. My two-year-old son, Navy, has cystic fibrosis and it’s been a rollercoaster of emotions, but getting the right support helped me through it all. 

Becoming a Father 

When Navy was born, everything was fine. We went home from the hospital and my partner Bronte was breastfeeding regularly, but we then noticed he wasn't putting on any weight. So we were a bit worried and spoke to the health visitor about it. Then the heel prick test results came back and confirmed that he had CF. 

We were in shock, it was the first time we’d heard about CF, and we didn't really know anything about it. There was no history of CF in our families, but we later found out that my partner and I are both carriers of the same rare CF gene. 

Having to deal with Navy’s diagnosis and being first time parents was really tough, it was a very difficult time. But the CF team at the hospital were great and they made us feel supported through it all. They told us about all of the advancements in CF medicine, and how much things have progressed in the last few years.

It still took some time to get my head around it and I openly struggled mentally for the first few months. I'm usually quite an upbeat guy and I just wasn't myself. My partner understood that I just didn't know how to navigate it all. We decided to have counselling, and I found that speaking to someone about my feelings really helped. I’m a lot better now and have a more positive outlook about everything.

Running the London Marathon for the Trust

It was a crazy experience, probably the best thing I've ever done. When I was growing up, I went to the gym and kept fit but never did any running – I wasn't really built for it. Then Navy was born and his diagnosis changed everything, I needed something alongside the counselling to help me process everything and I started running and it felt great - now I’m hooked!

In April I ran the London Marathon. It was my first marathon and run for the Trust. I've done a few half marathons around the South Coast and park runs, so this was the next big step. My partner and her family are big runners. They've done a lot of marathons and suggested that I apply via the Trust to see if I could get a place. I got lucky and got a spot, so I ramped up the training to get ready for the race.

Everyone came to show their support and watch me run, but we didn't bring Navy because he's too young for the large crowds. My partner was there and there were lots of people from the Trust cheering me on along the way – there was such a great buzz and lots of positive energy. I feel like this is just the beginning, and I want to continue to support the Trust and do more marathons across Europe.

Hopes for Navy’s future

Navy is a very boisterous boy, he's confident and doesn't shy away from anything. He's a very social little lad. He’s sporty, he has a bike, trampoline and a scooter and is always busy running everywhere - he loves being outside and taking trips with me to the park. Thankfully, he hasn't been ill at all. He's really healthy and my partner is a great mum, we stick to his daily routine and haven’t had any issues with his health. 

Navy is such a brave boy and is great at taking his medicine, he takes Creon and he’s been swallowing the capsule since he was one years old – so there hasn’t been an issue with him taking his medicines before every meal. He has reviews at the hospital every two months and lives a relatively normal life. When people see him, they wouldn't know that he has cystic fibrosis, and we just take each day as it comes. 

 It's quite daunting when you find out that your baby has CF, but I just want to let the other dads know that it's tough to start with, but it gets better, and counselling can really help you through it. We get so much support from the hospitals and the Trust - we've never felt like we didn’t have somebody to turn to for support.

Navy has a rare gene type which means that he's not eligible for some of the medicines, so I hope that there will be breakthroughs in research and medicine that will benefit him when he gets older.

I couldn’t be prouder of him. He’s a strong little lad and I’m going to keep positive and continue to support the great work of the Trust and raise awareness of CF however I can!