My love, my hero, my best boy. Nineteen privileged years of him in our lives.
It’s coming up to rare disease day. CF is the most common, life threatening, genetic condition in the UK, affecting 10,700 people, or one in every 2,500 live births, making it rare. Furthermore, the 10% of people affected by CF that are ineligible for the new CFTR modulator drugs (because either they have mutations of the disease that means that these treatments will not work for them, or because sadly, they do, but they cannot tolerate them) are an even rarer group, just 5,000 worldwide, including our Isaac. Read more on this (from me!) on the CFT website here.
Right now, Isaac is doing really well. It’s coming up to three months since his last course of IV antibiotics, which is a fantastic run for him these days. I can’t stop smiling. We’ve spent the weekend with family, fully celebrating his birthday. The fact that he can be nineteen befuddles me, in the best possible way. He is getting sick of my random cuddles, but takes it well. He is very much enjoying the break, having spent so much time in hospital of late. Restored with his pup, Remy, he is in his happy place.
If you are local, a wonderful, long time friend of mine from work, James Dingle, who plays in an awesome band, Sugarbeat, have super kindly chosen to donate proceeds from their forthcoming big birthday gig to the CF Trust. To purchase tickets, please follow this link. It is impossible not to like this band; if you want to find me, I’ll be on the dance floor, and mines a gin and ginger thank you. Please come dance with me!
After collecting money in the cold, all day outside Tesco last weekend with friends and family (we raised over £400), I’m feeling bubble wrapped in love for everything that our F&F do to support us and our fundraising. Thank you thank you thank you, it means so much x
