May is Cystic Fibrosis awareness month. Cystic Fibrosis is a life-limiting gentetic condition that primarily affects the lungs and digestive system, there are around 10,800 people in the UK that have the condition and around 1 in every 2,500 babies born in the UK will be diagnosed each year.
So why is CF so important to me? Just over two years ago, when my son Parker was 3 weeks old, we were sent to Bristol Childrens Hospital to receive the news that Parker had CF. I had no idea what CF was, all I knew was that it was one of the rare conditions that they tested for on the heel prick test. I even remember the nurse telling us the day that we had the test, when Parker was 5 days old, that it was just routine and 99% of the time it comes back as clear. So having the news was a massive shock.
We were given a list of medications that we had to start giving Parker immediately and in the weeks that followed, we were taught about the physiotherapy that we would have to start giving him to help ease the mucus from his lungs. Parker is now just over 2 years old and has an everyday routine like any other toddler, just with a few extra bits! The support we had over those first few weeks from the Bristol CF team and the support we have now off our local Taunton team is incredible. Having such a good support network around us has made everything so much easier.
One of the most important things I’ve learnt about CF over the last two years is that CF is such an individual condition. There are so many different gene mutations that affect each person differently and so many different treatments for each mutation. I’ve also learnt that treatments vary from country to country. This is what amazes me about social media, I have been lucky enough to contact and be contacted by mums here in the UK, but also Europe and the US using Facebook, Instagram and Twitter. I have been able to learn how different the treatments and routines for CF are worldwide. Unfortunately due to the risk of cross-infection two people with Cystic Fibrosis cannot meet, this is where I find social media so lush as when Parker is older I know he will be able to chat to others with the condition without having the worry about infections.
Parker takes 4 different medications every day, routinely. This is a range of multi-vitamins, antibiotics to prevent certain bacteria getting into his system and replacements for pancreatic enzymes. Parker will take up to 22 scoops of the Creon Micro each day, to help absorb vital fats and nutrients that his body won’t do on its own. He is such a little gem and is so used to taking his meds that he never makes a fuss when having to take them. He also has 20-30 minutes of pep mask per day to help shift the mucus from his lungs, when Parker has a cold or when we find he is quite coughy this can be doubled to make sure the bacteria is shifted to decrease the risk of infection.
I can’t lie and say living with CF is easy. Theres been plenty of tears, frustration and moments where I don’t know if I can cope along the way, but I also guess thats just motherhood! Luckily so far, Parker has only had one admission into hospital but I know this isn’t the case for some families.
I wanted to write this blog today to not only raise awareness but also to help other mums or parents in my position, CF doesn’t define my child, CF is just a tiny part of him. Every day I am so inspired by different stories in the media related to this condition and the amount of awareness that is being raised. Campaigns such as #strawfie and #yesorkambi have been taken part in by so many celebrities and it’s amazing to see more about this condition being discussed day to day. The fight for new drugs to be introduced to help with CF seems never ending and I hope to be able to attend the #yesorkambi protest later on this year to help fight for this drug to be introduced to the UK.
Recently I ran Bristol 10k and I am now planning on running my first half marathon along with my husband for the Cystic Fibrosis Trust, a charity that has done so much for this condition. They have fought for so many new treatments and have done so much research that it’s just so incredible to see how much has changed even in the last 10 years! I feel so lucky that so many of my family and friends have helped and are so eager to fundraise for a charity so close to our hearts. Having my sister run a half marathon and now train for a full, and my husband and his friends taking on the National Three Peaks Challenge later this month is so overwhelming.