When I sat down to write this post tonight the words to Fatboy Slim’s ‘Praise You’ immediately popped into my head … More Rosie’s 3rd birthday celebrations (Part 1)
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!
It’s fair to say that we’ve always had concerns about Rosie’s mouth and general oral functions. You may have seen that her mouth is always open – it’s not that obvious, you’ve probably not noticed! … More Mouth matters and a blue badge of blessings
Our genetic reports came back earlier this week and we finally have results as to why Rosie was born with Nemaline Myopathy.
In November 2016 both Iain and I went to the hospital in Bristol to give blood. These were to be tested to identify whether we carried any variants of … More Rosie’s condition “de novo”
Rosie had difficulties feeding when she was first born. I had tried to establish breast feeding whilst still in hospital, and with Rosie being my first baby I thought we were both getting the hang of it.
But at only three days old and less than 24 hours at home … More Feeding issues (part 1)
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