Blisters, love, and gratitude.

Holiday was wonderful. The kids had a ball, swimming dawn until dusk. I’m not sure if I explained about the holiday? If you’ve been following this blog for a while you may remember that Isaac had a wish granted 5 years ago by the wonderful charity Starlight. His wish was to go to the biggest water park in the world (he is part fish) and amazingly they really, truly did this! We spent 5 breathtaking days in Dubai at Atlantis (he is still featured on the Starlight website here if you want to read about his dream holiday). At that time, our little Rosa was just one, so we made the difficult decision to leave her at home with the grandparents as it would be too hot, and having her there would mean we could do less with Isaac and Anouk. So ever since then, we have promised Rosa that we would go again, and revisit everything we did then - as a family of five. A good deal gave us our chance - only four days this time, but every second counted, and our fears that Isaac would not be well enough to go were proved gladly wrong. 

Following the Voriconazole (to treat his evil lung munching fungus) Isaac was really well for a couple of weeks. Side effects made his poor lips blister so much they bled at nights (he looked kinda goth in the morning, lips black with dried blood) - but his chest cleared. 

Now? Coughing again. A low, deep, rumbling cough. Clinic have squeezed us in this week on an emergency list. It’s a worry+ situation; an increase in symptoms is always a worry, but gets a plus whenever ‘other life’ factors (Christmas, birthdays, holidays, epic fundraising walks....) are imminent, as I’m away this weekend for our walk. In fact, the walk is a worry generally as I’ve hurt my hip (for a couple of years now I’ve been able to click my hip in and out of the joint - true and, yes; yuck) and the last training broke me slightly... but I’m still very much planning to make it round (even if my wonderful friends joining me have to wheelbarrow me!). 

Thank you SO MUCH for all the support so far - it really means the world to me, our family, and our whole Holywalkamolies team. You can still sponsor us here - I hate to ask (at least, as often as I do), but CF research absolutely needs these funds, and Isaac is sadly not one of the 90% of people with CF who will benefit from drugs which are soon to be licensed which treat the underlying cause of his disease. He unfortunately has a rare, severe mutation. This means a longer wait - but I’m confident a cure will come, in time. Thank you for helping in any way you can x 

Huge thanks to my friends and family Jo Cayley, Gavin Dytham, Michele Dytham-Ward, Jennifer Dytham, Sarah Cater, Matt East, Gem Wilkins, Annie Marriot and Bonny Fountain. Michelle kavanagh, Jo Elliot, Jenny Hays, Cassie Flack, Erika Pyne, and Tracy Coulton-weir for joining me on this epic 67km trek.