Rosie is so ready for school.
Not to say she hasn’t loved the last few years with her daddy making friends with anyone who’ll chat to her, taking life into her own hands at the skate park or causing mayhem in … More Off to school
Another 6am start and another welcome hot cup of coffee made outside the door of the tent by one of our kind porters. I slept for six hours last night and despite feeling rested and well, I awake with my emotions in turmoil. … More Mt Kilimanjaro Part 3 : Shira Cave Camp > Lava Tower > Baranco Camp
I made a quick call to Iain and Rosie in the morning to say my last goodbye for a while as I didn’t know when I would be able to get signal again. 27 slightly anxious people, most of us strangers, all gathered in the reception … More Mt. Kilimanjaro Part 2 : Machame Gate to Shira Cave Camp
I am totally delighted, extremely excited and incredibly proud to announce that on the evening of Friday 16th June 2017, Rosie’s Charity Ball will take place at Clevedon Hall … More Rosie’s Charity Ball – 16 June 2017
I’ve been braving the cold, dark winter (avoiding the rain!) in preparation for this event since October 2016, but despite my efforts to get my fitness levels and distance running up, I still found it SO tough! … More Bath Half Marathon 2017 – Team Isabel did it!
Rosie is rare.
In fact, there are less than 50 people here in the UK with Nemaline Rod Myopathy. Less than 50. And today we are celebrating her rarity as it’s officially Rare Disease Day! … More Rosie features in Muscular Dystrophy UK’s Rare Disease Day campaign 2017!
When Rosie was first diagnosed with a neuromuscular condition we felt
isolated, alone and scared. We were desperate to connect with other families going through a similar thing to build a support network.
An amazing nurse who we love dearly called Dominique … More A Half Marathon for Rosie’s friend Issy
My Weak Muscles 