Amazing what you can do, when you come together ❤️
Myself and a group of AMAZING friends and family are walking 2000km over January with me, to raise much needed funds for the Cystic Fibrosis Trust. Due to the pandemic, charitable giving has almost completely dried up, and yet charities need the support more than ever, and we NEED a cure for CF.
To read more, and sponsor us, please click here. Walking team - thank you all so much!
My total so far: 254km
Group total so far: 1675km
How far we are off our £5,000 target: £250
Update on Isaac: Yesterday we completed a two-week course of IV antibiotics at home, and I de-accessed his portacath last night... Needle free life is good people! Symptomatically, he is doing really well. Lung function results? Not quite so great, but we can still hope for an improvement from the treatment over the coming days. Regular readers will know, we much prefer doing treatments at home than be admitted to the ward; more so now than ever, but .... it’s still exhausting, for us both. Today we celebrate with extra sleep, and for him, a long hot shower.
Isaac complains.... hardly at all. The odd groan and eye roll, of course. I mean, he definitely has his moments in other ways (...ask him to come off his PS4 before he has finished a game, and you get an ear full...) but how he just gets on with things like IVs, that are imposed on him, on top of his already aggressive daily treatment regime? Especially when he knows he may not feel any immediate relief; will need blood tests every three days; putting up with your old Mum in your bedroom, early hours and every evening, poking and pumping you full of drugs while you doze; the endless beeping of the syringe driver.....? He never ceases to amaze me. Our wonderful boy. Big shout out to Dan and our gorgeous girls too, Anouk and Rosa ❤️ Home-schooling, working full-time, home IVs, keeping the home in a semi-fit state, fitting in the walks.... this is very much a team effort. They have been wonderful, they really have x x
Mieke and Daan, adding their KMs in Rotterdam!
From Vanessa in NZ. One big global hug!
