Please allow me to introduce myself. My name is Andy Cole and my eldest granddaughter, Isabelle has Cystic Fibrosis.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Cystic fibrosis comes with challenges, affecting our physical health, mental wellbeing and how we choose to live our lives. But our community is uniting towards the ultimate goal of effective treatment for all.

During Isabelle's seventeen years, I have endeavoured to promote awareness of this condition, through various money raising activities.

Four years ago, I decided to travel from a point very close to where we live near Coton-in-the-Elms, South Derbyshire, which according to the Ordnance Survey is the furthest point from the sea in mainland England in any direction, to Lands End in Cornwall using my Senior bus pass. This took four days and I raised £2415.25 for the CF team at UHNM in Stoke who look after Isabelle.

We have been really busy since this, campaigning as a CF community to gain access to the latest modulator therapy medication, which could potentially have life changing benefits for patients with Cystic Fibrosis.

We took part in a gathering in Parliament Square to raise further awareness of our ongoing cause, which ultimately was to gain UK approval for this treatment.

In Autumn 2019, we received the fantastic news that the first of these medications had been approved for use on the NHS for UK patients. Isabelle received her first prescription for Symkevi in October, triggering an incredible few weeks for us as a family! Upon hearing this amazing news, Isabelle became something of an internet phenomenon overnight, with a simple video going viral, showing her joy at the news.

Within days, she had appeared on several radio shows, including Radio 5 Live Breakfast and Radio 4. A TV debut followed on BBC news and Steph's packed Lunch on Channel 4. After a whirlwind of media attention, Isabelle and her family were invited to Number 10 Downing Street to meet the Prime Minister and Health Secretary.

Whilst this was obviously an incredible experience for Isabelle, the benefits of the medication and the awareness raised, were even more exciting! Just a year later, we were given the real 'game changing' news that eligible UK Cystic Fibrosis patients would be able to access Kaftrio; a drug which drastically improves the lives of sufferers.

Before this medication, Isabelle's daily routine was punctuated by a constant treatment burden including regular chest physio, nebulisers, countless tablets and antibiotics. Intravenous antibiotics were a regular treatment and hospital stays were never far from our mind. Her lung function was way below average for her age, having a huge impact on her day-to-day life and activities.

Fast forward to today and her life has improved drastically. Her energy levels are like never before, her lung function much improved and she can now see a bright future for herself. The impact of this medication cannot be overestimated.

Whilst Isabelle is now taking and benefiting from Kaftrio, sadly not all of those with this awful condition can benefit from this particular drug, so the fight goes on for them, to find an alternative breakthrough treatment. Due to the complex nature of this condition, not every sufferer is suited to this treatment. There are almost 2000 known mutations of the Cystic Fibrosis gene and only some of these are treatable through this medication.

This brings me to my next fundraiser! On 5th August this year, I will set off using my bus pass from the same starting point as before, in Central England but this time, heading in the opposite direction; to the most North-Easterly point in England near Berwick-upon-Tweed. Again, this should take four days but this time the funds raised will go to the Cystic Fibrosis Trust to help further research so all can benefit from these wonderful medications.

This isn't a solo adventure; coming along with me will be Isabelle's favourite soft toy 'Pluto' who has been by her side constantly since she was diagnosed at 15 months old.

Thank you for reading this and I look forward to hearing from you and maybe meeting you on my epic adventure. I have included an image of my intended route for your information.

If you are able, please share and promote this page with your friends, family and social media. The greater awareness there is, the more people we will be able to help.

Thank you.