Saturday, 16 December 2023

Yesterday

Overwhelmed understates this feeling. Every year I feel like this, and it never gets any less emotional. 

Back in 2006, I returned to work after maternity leave. Following Isaac’s diagnosis and subsequent ill health and long periods in hospital, I was probably more fragile than I actually realised. I work in publishing, a job I adore, and I soon felt cushioned by my incredible colleagues. That December, trying to figure out how to fairly share out the gifts we had from suppliers (these were the days before compliance rules), the idea of a charity raffle was born, and the CF Trust was chosen as our cause. Once started, it became a small tradition, a few dozen people congregated in our little work kitchen, ate cake, and the draw was held. Even then, the kind words and support left me choked up (it took me many years before I was fully able to talk about CF and its impact on our family). 

The tradition, once started, grew. Colleagues started not only buying tickets, but also donating prizes themselves too. The draw marked the start of our festive period, and as we grew as a business, more and more people came. In 2020, floored by the pandemic and the relentless impact of CF on Isaac’s health, I assumed we would break and reconvene the next year. 

Enter Heather! Not accepting defeat, and recognising that at this difficult time, coming together for a good cause was more important than ever, Heather took over the organising and we took the event online and further, global for the first time, meaning our overseas colleagues could also join. Thanks to Heather, her team, Richard (our poetic host), the many colleagues that offer entertainment at the event (Charlotte, most notably) and Paul, we reached a new level, with colleagues dialling in from the US, Spain, Mexico, India and more. Since then, we have continued; this has become more than a custom, it’s a part of who we are as a group. More than 150 people attend or call in. Yesterday we raised a whopping £3,000. 

To say this means a lot to our family is an understatement. Any regular readers of this blog will recognise how much Isaac’s life has shrunk lately, due to ill health. The last few months have been difficult. Life revolves around home, treatments, hospital, and training his puppy. He is no longer able to work or be in education. Without fundraising for critical research, and raising much needed awareness of CF, not only would we be no closer to a cure, but I would personally feel significantly more powerless. 

My family, friends and colleagues have collectively raised over £98,000 for the CF Trust since Isaac was diagnosed. I have played only a part in this, and that part has only been made possible by all the support I receive from friends and family. 

We have huge hope, and we have never been closer to a chance for a different quality of life for Isaac (in his case, this will likely be through groundbreaking advances in gene therapy), and the work that the CF trust do and fund is fundamental to these advances. 

To everyone who has ever trekked with me, shaved my hair off, jumped out of a plane with me, baked cakes, ran marathons, jumped, gifted, organised, donated…. I will never be able to thank you enough. Every single part contributes to a whole lot. 

If you would like to support our fundraising you can do so here.

I will do an FAQ on gene therapy soon. In the meantime, love plentifully x 

#GSP❤️








Monday, 11 December 2023

Fifteen beautiful years

Our Anouk is 15. The most wonderful, kind, generous, smart and caring girl. We could not be prouder or feel luckier to have her in our lives. 

Dream big my beautiful, the world needs more souls like yours. 




We are still emerging from viral hell (COVID and who knows what, I can no longer tell who had what first, or who has had which bug, which is a worry). I felt so sick one day my actual hair follicles hurt and water tasted like poop. Three lots of IV antibiotics in a near row, exhausted, we are desperate for a break for Isaac and his poor liver. Even more, he so deserves a good Christmas, and we need him well for potential clinical trials. Please keep everything crossed for us that he stays well for a while, that’s all I want for Christmas. 

Have a great day x

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.