We are all our own rare breeds aren’t we? We all have our own little quirks, habits, rituals, behaviour, manners ….. these can be annoying or endearing – it all depends who you are and who you affect with them. The majority of people choose to behave in the way they do – learned or… Continue reading What is rare?
4 years into this journey – a journey no one could ever imagine unless they walk the steps we do each and every day. I read back on my blog that I wrote in the days leading up to William’s diagnosis, the affects of how a simple telephone call can change the world as you… Continue reading 4 years on
What a 6th year my boy has had. We’ve crammed in lots, because the unknown is always there and we want to enjoy more laughter and smiles each and every day. A lot of changes have happened this year, firstly the positives for my wonderful boy: he’s taken up and loves horse riding; he began… Continue reading Turning 7
So much has happened in 2019. We have so much to be thankful for, so many people to remember who have helped enhance our lives, and all for the same reason – William. His story has touched so many. At the very start of this year I made two big choices to step down from… Continue reading Reflection
7th September is a date now etched in my diary, not for anything other than to raise awareness of the rare fatal genetic condition my son has, it’s not an Anniversary I wish to celebrate, but one I feel I have to. 7/9 depicts the 79 Exons on the Dystrophin gene. Just one small fault… Continue reading 7/9 Duchenne Awareness Day
Today marks the eighth hospital visit (plus opticians) this summer holiday for little William – I am now fed up with it, I can only imagine how William is feeling. (And little sister Phoebe who has also come to every appointment too) It’s amazing what one email can do…. 3 months ago a simple message… Continue reading A summer of hospital
It’s like being kicked in the stomach or stabbed in the heart when you hear the words at your son’s 6 monthly review of ‘no improvement’ or ‘decline’. I hadn’t thought we would hear such things for years, as on the surface William looks like he is doing so well. He is growing, developing, having… Continue reading Kicked in the stomach
As many of you know our Big Build started nearly six weeks ago now. We have done so much to enable us to get to the start point, just to be able to say ‘Yes let’s do it’. Not just the saving, but the amount of meetings with advisors, builders, architects… just to make sure… Continue reading There is overwhelmed, then there is me right now
I’ve written before about ‘me time’ and focusing more of my time on the things that are important to me. But, until now, all I’ve really done is added things to my schedule of life – like running. This is great for me mentally and physically, but really it’s just adding on top of all… Continue reading Balance – getting it right
What does it mean to be ‘Rare’? There are people in life that strive to be ‘different’, ‘noticed’….rare even. Yet, my son is rare and I wouldn’t wish it on anyone. He is not the ‘rare’ type of ‘cool’ or ‘individual’ of his own accord, his rareness was shoved on him and he had no… Continue reading Being Rare
My Boy, Duchenne & Me 