Can’t tell you all how much we appreciate all of this. These donations not only fund important research into Cystic Fibrosis, provide much needed grants for medical professionals to become specialists in CF, but also support people with CF, many of whom have been in isolation during this whole pandemic.
Again, many hugs and thanks to Heather, Charlotte, Kay, Beth and Megan for organising the scavenger hunt at work, which leads us into the raffle celebration, and all the teams who are participating, we’ve been crying with laughter watching some of the videos coming in! And to our MD, Paul, for wanting this to still happen this year, bigger and better, despite all the complications. I am so, so grateful. Also to Vicky for the help with internal comms - I can’t quite believe that over the last 14 years we’ve gone from raffling off a few gifts from suppliers, to this huge event, that many of us in ELT look forward to each year.
- For CUP friends only, to enter the raffle, please see internal comms, and remember not to include gift aid, as that contravenes gambling laws.
- For everyone else, to sponsor our 500 challenges, you can do so here (and add gift aid if you are a UK taxpayer).
Right now, Isaac is stable. Lung function is no better, but no worse, and he continues to have problems with nausea and vomiting. But we have options, including another anti nausea drug to try, and all that said, he’s just completed what I suspect to be his first full week in school this term. He’s had a good stretch, for him, without IV antibiotics which is both reassuring.... and yet, feels risky going into the festive period. Being on home IVs for Christmas would be a shame, but an admission to the ward? Much worse; and we always have that risk at the back of our minds. For now, every good day deserves a mini celebration (tonight with kebabs).
We’re not quite sure where on the priority list Isaac will be for COVID vaccine yet. Adults with CF are on the priority list, but as kids are doing so well, he is no longer identified as critically vulnerable according to his team. Which is a huge relief, but we still hope he can receive this vaccine soon, and we have no doubts about its safety, only fears that anti-vaxxer propaganda will mean people will not take it, and continue to put the vulnerable at risk. Having lost our Mamgu (Welsh Grandma) to COVID this week, who died in a care home, without her family, I urge everyone to read the science, not the sensationalist news and associated trolls.
THANK YOU AND KEEP WELL x
Feeling the Frida today; like our Mamgu, a strong and wonderful woman. Pictures also from her home, that I feel honoured to have visited.
