Hello my name is Harley and I am 26, I was diagnosed with Cystic Fibrosis at the age of 4. I will be doing my skydive with my Dad (Matt) by my side. 

Cystic fibrosis (CF) is a genetic condition, meaning you are born with it. It affects the mainly the lungs and digestive system, however affects many other parts of the body. More than 10,800 people in the UK have CF but one in 25 people carries the faulty gene that causes it, usually without knowing.

Here is a bit of my story. 

Before diagnosis my parents were constantly back and forth to the drs with me because of my chest and stomach, they kept being told I would grow out of it and it is just ‘toddler chest and  diarrhoea’. It was actually my health visitor who told my parents what was wrong with me and supported them to push for testing. When I was diagnosed my parents were told I would be lucky to make it to my mid 30s. I never really felt much different to others growing up until I got to about 10 years old, I was bullied for years because of my health and started to notice I was different to my peers. This effected me and I didn’t speak about my CF for a very long time.

My health wouldn’t be common knowledge and I would share the bear minimum with my friends, I worked on a need to know basis. I have worked so hard to be me before my health, as I felt so judged because of my condition. My health was always up and down as I grew up, with admissions into hospital, countless amounts of IVs with 2+ weeks of intravenous antibiotics to fight infections, daily treatment which include physio and nebulisers taking hours out of my day and continuing to do so. 

The older I got the more my life expectancy played a huge role in the way I viewed myself and my life. I was desperate to live longer but knew the reality of this, adding pressure to myself to achieve as much as I could as quick as I could incase I ran out of time. 

At the age of 21, I hit the worst point with my health, I studying for my 1st degree and I lost 20% of my lung function when an infection took hold that we could not budge. I spent the majority of my final year studying from my hospital bed determined to graduate with my class being as stubborn as I am, refusing to accept extensions. I managed to achieve this and walked the stage with my peers, graduating with a First Class degree. University was a turning point for me, I learned to start talking, sharing my health journey some of my close friends and learned that my health only stood in my way as much as I mentally allowed it too.

Heading into my mid 20s my health was deteriorating faster than I anticipated or cared to acknowledge, the idea of my prescribed timeline was ebbing closer and my deterioration was only solidifying this. The day offer my 25th birthday a medication called Kaftrio was passed on the NHS. This medication is the most advanced CF treatment there is, it is the kind of treatment I never thought I would see in my lifetime. A miracle in tablet form. It is by no means a cure, but it does promise to slow down our deterioration, extending our lives, more years, more time. 4 months after my birthday I was prescribed Kaftrio. I have now been on the medication for nearly 2 years and I have learned to live my life more, no longer adding pressure to myself because of my prescribed timeline. 

My CF is still here, I have many many complications due to my health that are a result of so many years of damage to my body caused by CF and extensive treatment which Kaftrio cannot reverse or minimise. However, day to day I am managing life better, less infections, which means less damage moving forward. 

Kaftrio is amazing. However, in a time where the community is celebrating, there are 10% of the community in which Kaftrio cannot be prescribed. It is also not a cure. Our job is not and will not be finish until all CFers have access to such advanced medication and a cure for CF is found. 

All money raised from mine and my dad’s skydive will go to the CF Trust and support the research continuing to fight for a cure.