We did it!

This was a phrase much used on late Saturday night and Sunday in our cute little cottage near the Jurassic Coast. Sometimes in wonder, some in disbelief, many in pride. 40km is not the longest any of us have trekked while fundraising for the CF Trust (we did 67km in a day in the Surrey Hills once), but this was tough. Steep, beautiful, sometimes scrambling. Doing this kind of event as a group is bonding in ways I cannot explain. Sarah, Michele, Jo, I hope you know how much you all mean to me, always. 

We have raised over £3,800 with this trek, plus gift aid (link here if you would still like to donate). No matter the amount, we appreciate every sponsor (and spend a lot of time delightfully debating who the very generous anonymous donations may be from!). Thank you so, so much. 

Today Isaac completed his latest course of IV antibiotics. He’s feeling much better, and coughing so much less. The feeling he describes to me after having his port de-accessed following two weeks with a needle in his chest sounds wonderfully liberating - especially so in the heat of summer. The packing away of the IV supplies back into the cupboard, which dominate the kitchen while he’s doing them, feels cleansing and cathartic. Today was a breezy happy day, until I see the children of Gaza starving and I weep again. I am supporting the Red Cross in the small way that I can (https://donate.redcross.org.uk/appeal/gaza-crisis-appeal) and plan to join protests. This cannot go on x 

More drugs please

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 therapy research is all still very new and commercially super 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 excitingly we have options other than gene therapy now too. One example is phage therapy. I LOVE phage. We should all 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 sister Jo, friend Sarah, cousin Michele 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 ❤️

Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after your death. Thank you.