There has been a lot going on in my paid work/voluntary work/motherhood/wife/duchenne mum life over the past couple of months. It is not that I haven’t wanted to blog about how I feel; but that I just haven’t had the time….and that is something I need to re-address; me time, my fitness and my health.… Continue reading Steps …
Today I am a very proud mummy of two amazing kiddies. Aren’t we all, I know, but I’ll take this one a bit further. Exactly this time last year I attended a parents evening (on my own) that left me crying, desperate and struggling to know if my son would survive at school. One year… Continue reading Proud
Such a taboo subject …… but affecting so many. I don’t think many people in my world haven’t been affected by depression – either themselves, their family or friends. It is not just people who have over stressed jobs, can’t pay the bills, have ‘worries’ who are affected. This can happen without your control, it… Continue reading Mental Health
This video outlines my blog posts on here of my son’s shock diagnosis in January 2016 with Duchenne Muscular Dystrophy (DMD) until present day. The titles tell their own story of my journey into accepting and coping with my son’s life-limiting condition. This song has been on my mind for many months, it just speaks… Continue reading Faith
World Duchenne Awareness Day falls on 7th September every year. This is in recognition of all those with Duchenne and those that have also left us too soon from this devastating condition. Unfortunately this is our 3rd time of raising awareness on 07/09. Let’s hope you can support us with more of William’s red balloons… Continue reading Red balloons 🎈
I shed a little tear tonight as I watched and re-watched the video of my little William ‘running’ at sports day today. It’s really tough day in day out seeing your boy’s differences to others, seeing him struggle with some of the simplest of things in life. He does however do it with the most… Continue reading The day of dread – or not?
A little light of hope was thrown our way when we went to Summit Therapeutics in December 2017 to hear all about their latest trial for DMD. This trial is (was) the only ‘trial’ & ‘shimmer of hope’ on the drugs market for William and his duplication DMD. That hope has now been lost –… Continue reading When hope gets shattered
The rise and fall of emotions as a parent with a child with a life limiting condition is vast: I’m currently in that turmoil of waves of emotions. Whilst I am happy Phoebe turned 3 and had an enjoyable birthday & whilst I am happy I celebrated my birthday one week later with my family… Continue reading The rise and fall of it all
I’m sat down on a Friday morning having a coffee and a pan au raisin after getting my nails done – kid free for 2 hours! These things are not now in my life too often and I call them pure luxuries. I found it interesting, when I presented to The Rotary last week about… Continue reading ‘Me’ time
So we are now into set 3 of William’s steroids (He’s 10 days on 10 off – thick pen on the calendar is a must) and it’s safe to say I think we made the right decision. That is me and Matt, no doctors really make a decision for you, you have to have it… Continue reading Worth it – I think!
My Boy, Duchenne & Me 