Jane's blog: Running three marathons for Cystic Fibrosis Trust!

William’s diagnosis

When I was pregnant with William, there were some signs that something wasn’t quite right. At the 20-week scan, they told us a “soft marker” had shown up, which was associated with several conditions, including CF, but most likely meant nothing. We were given the option of further testing, but declined as it would have been more invasive, and we didn’t want to put the pregnancy in any additional jeopardy – this was a much longed-for baby! My husband Paul and I were both tested for the CF gene. I was found to have the F508del gene variation, but nothing showed up for Paul, so we were told CF was unlikely. But despite everyone’s reassurances of “it’s normal to worry with your first baby”, I remained convinced that something wasn’t right. 

William was born on a sunny Thursday morning and was perfect. He was a healthy weight, had ten fingers and ten toes, and passed his meconium normally. We all breathed a big sigh of relief. But from day one William really struggled to feed, vomited up everything we did manage to get down him, and was obviously in lots of discomfort. He started to lose weight. I was breast feeding, so it was initially put down to that, so we added in formula, but despite our best efforts he just kept getting skinnier and skinnier. We increasingly feared that there was something seriously wrong with our baby. 

A few days after William had the heel prick test, we received a phone call from Birmingham Children’s Hospital cystic fibrosis team asking us to come in for a sweat test. I remember that when we returned for the results a nurse met us at the door and made the same small talk I used to make when I worked on Intensive Care and had to walk relatives to the family room to receive bad news. The consultant was waiting in the room to tell us William had CF. 

Caring for a child with CF

By this point William looked so thin and poorly, I was frantic with worry. Although it was a life-changing and devastating diagnosis to receive, it did at least mean that we now knew what the problem was, and we could manage it. I was relieved something could be done. 

Having a newborn baby can be pretty brutal at the best of times, but cystic fibrosis brings a big bag of additional challenges to manage. He was incredibly slow feeding, was then difficult to burp, would often regurgitate and need changing multiple times, and then it would take a long time to settle him. The whole process took about three hours, and he needed feeding every 4 hours, so it didn’t leave much time for sleep! We also needed to get to grips with his physio and medication regime. There is a lot to learn very quickly.

As anyone who cares for a child with CF knows, you can never take a day off from it. It doesn’t matter if it’s a birthday or Christmas or Disneyland, the physio and medication regimen have to happen, and this will be the case forever. I think the enduring nature of the diagnosis was what I found most challenging in the beginning. That there would never be a day when we can all “put it behind us”; that this will be our never-ending normal.  It’s difficult not to feel sad about that and it took me a long time to adjust. 

William is now 10 and he’s on Kaftrio, which has been life changing. Since he started on the medication, he’s not needed any antibiotics, he hasn’t missed any days of school and his energy levels have rocketed. His chest had never been that bad, but he’s always suffered with digestive issues and abdominal pain, and since Kaftrio we’ve had no problems. It’s revolutionised our lives and I think it’s absolutely vital that everyone is able to access this life-altering drug. It really is a game changer!

Getting into running

I was never a runner before having William, but his godmother was, and she suggested we do the London Landmarks 10k together when she saw Cystic Fibrosis Trust was a charity partner. This was my first fundraising event for the CF Trust, and goodness me did I earn that sponsorship! I remember my first training run I couldn’t even make it around the block before having to stop with a massive stitch. But I persevered and we did the race together. After that I was bitten by the running bug. Next, I did the Royal Parks Half Marathon for the Trust and then built up to my first full Marathon, London 2019. In 2021 I ran the London Marathon again for the Trust, this time in costume, and managed to get the Guinness World Record for fastest marathon dressed as a 3D plant – I ran as a rose for the Sixty Five Roses club!

Running three Marathons in 2024

This April I’ll be running the Boston Marathon and the London Marathon in the same week, and then the Chicago Marathon in October, to make it a hattrick for the year. I’m very excited about my first non-UK marathon, but the ‘maranoia’ has set in early – every little twinge is now a potential major injury, every sneeze could be the onset of flu. It’s always like this before a big race; you’ve worked so hard, you just want to get on the start line feeling good, but having to cross the Atlantic does add another level of jeopardy (thinking misplaced passports, missed planes, jet lag, lost luggage…)! 

The training does get quite tiring and finding time within your week to run can be tough; plus the weather this winter has been pretty miserable. I’ll be glad when I can drop it down to running for pleasure rather than sticking to a rigid plan, at least for a couple of months, before it starts again in preparation for Chicago. 

Advice for new runners

I think everyone can be a runner, it’s just a case of putting on your trainers and taking that first step. I didn’t set out to run a marathon, I just wanted to do a 10k. But I enjoyed it and then built up from there. I also think it helps massively if develop a love for running – especially on a cold wet Sunday morning! Some of my friends are also doing the marathon this year, but they don’t like running, so they’re finding the training much tougher going. If you really don’t love running, then there are loads of other challenges you could do. 

Advice for new parents of a child with CF

However sad you’re feeling now, you won’t feel like this forever. It’s a really tough diagnosis and incredibly daunting, but it will become your new normal. CF is something that your child will live with, but it won’t be their defining characteristic and it won’t define you as a family. Your child will face all the other joys and challenges of life, this will be just one extra thing they have to manage.

I also think it’s incredibly helpful to speak to another parent who has been through it and can share their lived experiences and wisdom. I used to panic over the smallest things and really overthink everything, so just having someone who has been through it all and can reassure you is great. If you haven’t got that person, then Cystic Fibrosis Trust’s website is a really good resource and has lots of personal stories too. 

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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, 148 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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