On July 19th 2025 my fantastic friends and sister will be joining me on a 40km trek along the brutal but beautiful Jurassic Coast.

Michele Dytham-Walker, Sarah Cater and I are taking on this challenge to raise money for the Cystic Fibrosis Trust.

Why CF? Well, this is about an issue that is very close to my heart. In fact, it's directly over, next to, and surrounding my son, Isaac’s, heart: in his lungs. And it's also in the lungs of approximately 11,000 people in the UK, and some 80,000 worldwide, who have Cystic Fibrosis (CF).

The CF Trust fund research that has led to major developments in the treatment of CF; Since the 80's the median life expectancy for a person with CF has risen from 16 to about 35 years, but while there have been improvements in CF care, the focus of that care was solely on treating the symptoms of the disease, rather than the underlying defect; For Isaac we have drugs that help thin and hydrate the sticky mucous that pools in the CF lungs, drugs that help compensate for ineffective pancreases by giving synthetic enzymes to digest food; we have drugs that reduce inflammation in the airways and drugs that attack the many different strains of bacteria that inevitably find their way into diseased lungs, causing recurrent infections that in turn lead to irreversible scarring; and, for a lucky few, we have the final option of transplant.... trading in CF lungs for the lungs of a generous stranger. But even a transplant is no cure.

But CF treatment has begun to fundamentally, amazingly, change. It’s been 30 years since the CF gene was first identified, but only now do we finally have drugs available that treat that actual genetic defect. These new drugs have the potential to change the entire approach to CF treatment. They are not a cure, but findings so far show they help slow the progression of the disease.

However, these new drugs only work for 90% of CF sufferers, and Isaac, is not one of them. He is in that unfortunate 10%, due to a severe and rare mutation of the gene, which requires a much harder fix.

We desperately need research to continue, to help him and others in this group. In the meantime, as CF is a progressive disease; and these new treatments cannot undo the damage to his lungs that CF brings. To benefit from future advances, he continues on an aggressive treatment plan, including hours a day of physio and treatments, and weeks long courses of IV antibiotics around six times a year, to keep him as well as we can.

His health is declining, and with it, his world shrinking. We find ourselves in hospital more and more, and the complications of CF, multiplying. Our best option is now in the pursuit of gene therapy clinical trials.

Research and drug development cost, and pipelines feel endless. But it is through the support of people like yourselves that any of these drugs ever reaches the CF population. And, despite the seemingly astronomical sum required to make a difference, let me assure you that it's the little donations that add up to the bulk of the funds needed.

Thank you so much for reading, Lizzy x

To read more about Cystic Fibrosis, you can find my blog at https://mymerrymolyworld.blogspot.com/

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. One in 25 of us carries the faulty gene that causes it, usually without knowing. Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis.