Lots has been happening lately. We are talking to our team about new clinical trial options. Hope is everything.
Sorry - it’s tricky as we can’t yet say much, as gene research is all still very new and commercially valuable to the pharmaceutical industry we are not able to share what trials he has taken part in (two) or how he found them (mixed) until the data is published. We are tied into his last trial until autumn, but we have options other than gene therapy now too. One example is phage therapy. I LOVE phage.
In my very simple layman’s terms, phage is a virus whose sole purpose in life is to destroy the bacteria Pseudomonas. Isaac is colonised (meaning these bugs have taken up permanent camp in his lungs) with three bugs; two bacterial, one fungal. But the most prevalent in his lungs by far is the PseudoA. I still remember the call from the hospital to say he had first grown this. He was 18 months old and I sat, head in hands, on a mossy bench outside the office. This news changed our lives forever, resulting in daily nebulisers and frequent courses of IV antibiotics ever since. The idea is that by inhaling phage directly into his lungs, and if that can reach the parts of his inflamed and damaged lungs, we might be able to destroy the unwanted Pseudo camps, or at least, damage them. The stuff of my wildest dreams!
Isaac has asked to start IVs next week, as his symptoms are worsening. That he has matured so much in these last couple of years, and now plays an active role in his treatment is, I don’t know how to describe it really, just, brilliant, and relieves the pressure on me massively.
In less than three weeks, my friend Sarah, cousin Michelle and I will be trekking 40km of the Jurassic Coast. This will be a 9-10 hour slog with difficult climbs, probably during a horrible heatwave. To help fund vital research that can lead to real life treatment options for people with CF, like those I describe above (especially for the 10% like Isaac who have no other options) please consider sponsoring us here. Every sponsor, small or large, is truly appreciated. Thank you thank you thank you! X
Anouk’s prom ❤️
