Learning to let my children see me using a ventilator on a daily basis, despite the heartbreaking worry of how they’d react. Would the machines I depend on to keep me with them longer, frighten them? And would even they still love me the same? Continue reading Adjusting to NIV around my children
(Title Image: Childhood photo of me during Physio, standing with a walker) I don’t recall a clear cut day that either of my parents sat down to break the news to me, “Fi, I’m sorry to have to tell you this but you have a muscle disease.” I guess that’s how one would expect to be given such a revelation thanks to the movies! No, I always knew. My parents were very open about my condition. They’d told be bits and pieces (age appropriately) from since before you retain memories, mainly before age 3 I believe. There was no way … Continue reading How My Parents Told Me I Had MD
(Title Image: Photo of Ava and I reading a book, coming off a strand of DNA) Yesterday Ava had her annual physical exam at St Mary’s, Manchester Genetics department. Our old geneticist Dr Kingston had recently retired sadly, but we were transferred to the capable hands of her replacement Dr Browynn. Although we came out no further knowing Ava’s future, we came away with something we didn’t have before… HOPE. The Back Story (IMAGE: Diagram showing the autosomal dominant inheritance pattern if one parent is affected. Showing 25% probability child will be affected) If you’re new to our journey, we … Continue reading 100,000 Genome Project | Answers for Ava
(Pictured: A 2 part title image. The first features a ventilator where the display screen instead of graphs and breath rates reads; “5 Years to Acceptance.” Next to it is a photo of me with my vent mask on with long tubing, over it is a comical SnapChat filter where it puts cartoon cat ears and nose on me on my vent) I didn’t think I’d ever be writing about myself using NIV (Non-Invasive Ventilation), never mind felt bold and at peace enough with it to pubically display a picture of me on it! This may in fact be the … Continue reading My Journey Adjusting to NIV | 5 Years to Acceptance!