Exciting possibilities

I’ve just come from a live Q&A session with an expert panel on advances in genetic therapies and CF. I can honestly say I’ve never been so excited about research, nor so optimistic about having a clinical trial that could make such a huge difference so within our reach. I can almost touch it… 

The panel that I was a part of tonight was recorded and will be available to view at some point, but in the meantime, this CFF (US) video will give you an insight into our potential options. Trials in the UK start later this year. It’s all a bit mind blowing after no possible options (to treat the underlying cause of his disease, rather than just the symptoms) for almost 18 years. 

Next post… 18 years of our wonderful boy x

Dali drawing following a Dali VR adventure (fully recommend this exhibition) with these beautiful friends x 

Earthquakes, war and new love

Meet the newest member of the Moly clan. Another beloved four legged friend. The older I get, the more  I realise how important animals are for my, our, mental well-being. We are in love. Rosa is besotted. The whole family are enjoying this wonderful new lifestyle. 

Rosa is a superhero dyslexic and has always found everything about school life incredibly difficult. Riding has been the first thing she has felt truly good at (despite her having many other talents not so valued in the curriculum) and this new confidence has helped her no end. It’s so wonderful to see her wings grow and in something she absolutely loves. 

So far, this has been a month un-blighted by CF so much. We had a day in hospital for Isaac’s annual review. Tests galore, for which we now await the results. I can never say I’m not anxious when we’re waiting on test results, but it does become easier over time. Somehow. 

For now, we are feeling so unbelievably lucky; to be enjoying a period of good health, to have hope of a somewhat cure (see my last post here about ground breaking new gene therapy, for which Isaac should be eligible for trials, and which in the last month, he has made an important decision to try, should he be able, which is massive) and to be able to extend our love, time (and limited funds! - huge thank you to my Mum and Stepdad here for helping) to enjoy a new pony. 

At the same time, our thoughts right now are in Syria, Turkey and Ukraine 🇺🇦 and the atrocities they are enduring…. simply heartbreaking. I hope, like us, you have been able to donate to help save lives (If not, you can do so here).

This is our Lottie ❤️