Most of you know our story, of how Kenzo came into the world, about the operation that saved his life a few days after he was born, about the traumatic three months in hospital which followed on from this and about his diagnosis of cystic fibrosis. Some of you may know that he has had two more hospital admissions since his first home coming and those of you who have spent some time with us will have seen the extent of his daily care. With CF there is no day off. Kenzo needs many medications and physio every single day so that he remains nourished and can breath with ease. Simple, necessary, things most of us take for granted. When we go on holiday we pack an extra bag full of his medications; when we go to the shops, or on the school run, or to the library or walk the dog or go to the beach, or anywhere, we must take his meds in case he gets hungry. We have to think about environmental factors when meeting friends or going to a party, or the kids going on school trips and how to adapt things so that he and his brothers can attend. Of course, some of this is now second nature to us but there are times when our rhythm falters and there are situations that stop us in our tracks. There is only so much we can do - especially in the winter months when the inevitable bugs come our way - and his daily treatments can’t fight them all. We can do our best but much is out of our control. Last year my sister and I ran the Brighton half marathon to raise money and awareness for CF Trust UK and it was a really positive experience. To do something that will positively impact the future of all those affected by CF was a great thing. But when we crossed that finish line our journey did not stop. You see there is no cure for CF. There are now some amazing medicines available thanks to scientific research but these cannot be taken by all with the condition and for everyone with CF the medicines they can take are a constant. And sometimes we have to contend with a shortage of medications, which can be stressful and worrying. There is no day off. At the moment the responsibility is primarily mine - I monitor his health, I stock take his medicines, I administer his medicines and do his physio, I organise appointments and liaise with his health care team and together, with Marcus, we make micro-decisions on a daily basis to allow Kenzo to live his life whilst still protecting his health. It sounds a lot, it is a lot, but we have found a way to fit it into our lives and we have a great time together. We’re busy but then isn’t everyone. When, one day we hand over all this responsibility to Kenzo, I hope that further breakthroughs in the understanding of CF and the treatments available will take the pressure off. I hope that there will be less medicines for him to take, fewer hospital visits and less physio so that Kenzo, and the thousands of others affected by CF, can take a day off. So, please, if you can, sponsor me to run the London Marathon 2025 and help to raise money to fund research that will not only save lives but hopefully make them fuller. Thank you for reading our story and if any of you are in London on April 27th 2025, come cheer me on, I’d love to see some friendly faces 💛