100 incredible miles

On September 2nd 2022, my friend Simon Wright will be running the Millstone 100. 

100 miles over the Peak District. Amazing, or just plain bonkers! 100 miles!!!!

Simon is running this on behalf of both his families charity, The Millie Wright Children's Charity (see Simon Wright is fundraising for The Millie Wright Children's Charity (justgiving.com) for the amazing work that they do), and, very kindly, for the CF Trust. Please give anything you can, every penny really is much appreciated. 

The fact that I have such beautiful friends who think of our cause, on the back of their own tragic loss, is touching beyond words.

You can donate to Simon’s charity here. They are raising important funds for families of children diagnosed with rare, life threatening non-malignant liver, renal and haematological conditions at Leeds Children’s hospital, to mirror those on oncology wards. A gap that must be rectified.

Or to the CF Trust on my fundraising site here.

Good luck Simon, and thank you doesn’t quite cover it. ❤️

Lungs that travel well?

Isaac continues to do really well, post surgery. The headaches have gone, but his cough is slowly building. 

Clinic today, and his lung function is slightly down on where we were just post-IVs, which is disappointing. That said, his quality of life is so much improved. He has started part-time work, with his Dad, as a builders labourer. The fact that he can now do three days a week, lugging things around, learning some carpentry and joinery on the job, and doesn’t come home broken is… massive. 

These changes, we celebrate every day, and an even bigger celebration will be a holiday later this month. Our first in, years? 

Cystic Fibrosis likes to throw spanner’s in the works when it can, and in this case, the search for travel insurance has been painful. Yes, he can walk 100m unaided. But, yes, he takes many more than 8 medications a day for his condition (to keep him well), and yes, he’s been admitted to hospital more than twice in the last 12 months. Many companies won’t even quote when you get that far. Finally found something which covers him, and is less than the cost of the holiday itself. I imagine if the worst does happen, transfer to hospital might be on a blind, constipated, three legged donkey, but needs must. 

I’ve been involved in a few initiatives with the CF Trust lately, and if you’d like to hear me sounding about 12 and inappropriately giggling too much, you can hear a podcast here. 

Right now, we will concentrate on keeping him as well as we can to travel. Have a great day x 

Miro ❤️

The little twiglet

Life after recovery feels blissful. 

Pain free life: never to be taken for-granted. 

We are making the most of every good day. 

Chilling with the little one… we can never get enough of woods or ponies. 

Wishing you all a wonderful and well summer x