Cystic Fibrosis is a genetic condition that affects more than 10,600 people in the UK. This week is CF week, with a focus on the ‘We Won’t Stop’ campaign, now in its 7th year, with a simple aim to remove the taboo of this condition and encourage stories of all those fabulous people who have the daily struggle of living with CF. On Friday 18th June there is a Wear Yellow Day to show your support, of which all of us at InBody UK will be doing!
Some of you may know that this condition is close to our hearts at InBody UK, as Francesca Cooper, our UK Co-Director’s young son, suffers from it.
It has been a life changing experience and with the permission of Fran, we wanted to share her story.
In October 2020 I received the news that I was dreading that Barrett, my precious son, has Cystic Fibrosis. It was something I had expected based on my knowledge and research, but to get the confirmation was naturally a shock. The worry and fear that went through me was something I struggled to explain. As a parent you do everything you can to protect your children, and this was just a very scary concept!
My emotions were all over the place; anger, sadness, guilt and most of all feeling a complete lack of control – I have never cried so much and got angry, cried again, got angry over and over in a single day!
The first week and months I was just trying to survive and learn, just to make sure I could do everything possible. I read so much about CF and even now some days I feel like I have been hit by a wall of emotion. But, I have to pick myself up, look forward and be there every step of the way to make decisions and be a rock and support for my young son to give him every opportunity and the best outcome for him to live a full life.
Being a working mum and having the additional challenges and responsibilities that having a CF child presents, can be physically and emotionally hard. My job means I am sometimes away when he starts to get sick and many a time I work from the side of a hospital bed! Balancing life is tricky… Barrett’s health is restricting to our family and a lot of our lives have to work around his health but we do not let it govern them. I’ve learnt to be honest about it now and people and customers do understand, this I will always be grateful for.
I will try to work as long as I can, but ultimately I know that one day I will have to leave my career to care for my son full time. However, right now I have a platform to educate and share my journey through my job and it’s an important message that I believe in.
Keeping Barrett healthy and strong is so important. The seasons massively affect how he feels and how well he is. Over the summer he has a chance to build up the muscle mass and weight that he then loses during his poorly winter phase. Exercise is essential for keeping his lungs healthy too, giving them the best chance of fighting infection or even avoiding it. I know a strong body is usually a healthy body and so monitoring weight is not enough. I use InBody to monitor his muscle mass to see the changes to exercise and food and to give him the best chance later on in the disease by keeping his body as strong and healthy as it can be. It’s a tough diagnosis to handle and the future terrifies me as his mother.
Life always throws us curve balls and this was a huge one to deal with. We are fortunate to have a great team around Barrett and I, and we keep growing and learning together.
CF is a disease that will not leave our home, it’s like an unwanted guest that we will live with forever. We take each day and are grateful for the good times. We won’t stop!