A few years ago I wrote a couple of blog posts about Rosie being diagnosed with Mitochondrial Complex 1 deficiency. It was a bitter blow followed by a total miracle.
Over the last few years there have been big questions about how … More Rosie in the medical history books
It’s been a while!
To be honest, I haven’t felt like writing much – nor have I had the time or energy.
Life found my weak points and relentlessly … More “Enough”
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)
So here we were. Rosie was in hospital recovering from another nasty cold. Her lungs were collapsing left, right and centre – literally – and Iain and I were dealing with the news that Rosie was going die … More A year living with Complex 1 Deficiency (part 2)
Before September 2015 (and after that terrifying night where she died outside the doors of A&E) we lived in hope that life with Rosie would be manageable. We lived in hope … More A year living with Complex 1 Deficiency (part 1)
If the walls could talk in the parents room of the intensive care unit I’m in no doubt they would share some of the most fascinating, heart-wrenching and inspiring stories … More A little boy dies
My Weak Muscles 