Christmas Together

“Kieron doesn’t know how many Christmases he’ll have left with his son, Alfie.” Holly Willoughby’s opening line in the Together for Short Lives Christmas Together 2020 appeal. When I heard that played back for the first time I just felt sick and a cold shiver travelled from my head down to my toes. When you […]

Self isolation

Today I find myself writing this blog whilst in self isolation! I, like 10 million other people in the UK, have downloaded the NHS COVID-19 app and on Saturday I received a notification telling me I had to self isolate for 10 days as I’d been in close proximity with someone who had tested positive […]

What a difference a year makes!

The picture above was taken this time last year at the Virgin Holidays store in The Trafford Centre, Manchester. A surprise visit on a rainy Thursday evening turned into the most magical adventure when we revealed to Mila-Rose and Alfie that they would be boarding the plane for the holiday of their dreams to Walt […]

Brews Brothers

This week I’ll be hosting a voluntary online zoom chat for the charity, Together for Short Lives. They have very kindly supported my vision of a men’s support group for Dad’s, Grandad’s and male carers who care for a child with complex needs. I came up with the idea of ‘Brews Brothers’ during lockdown as […]

World Duchenne Awareness Day 2020 (part 2)

World Duchenne Awareness Day is celebrated every year on 7th September. Worldwide awareness will be raised for Duchenne and Becker Muscular Dystrophy (a milder form of muscular dystrophy). The date, (7/9) refers to the 79 exons of the Duchenne gene. In this blog I’ll explain a little bit about DMD and our experiences so far as a family. I’ll just […]

World Duchenne Awareness Day 2020 (part 1)

In 2013, World Duchenne Organisation began imagining a day that was dedicated to raising awareness about Duchenne Muscular Dystrophy (DMD). A day on which a symbolic gesture would be made worldwide and a message would be transported everywhere. They looked into each other’s eyes, put pen to paper and started work on their plan. 7 […]

Life out of Lockdown

Forgive me followers but it has been 23 days since my last confession, I mean blog! I hope you are all keeping well? I’ve been slowly easing myself back into society since shielding was paused at the beginning of August. I’ve found some aspects of it to be fine but others a little unnerving such […]

131 Days Later (part 19)

19 weeks. 131 days. 3144 hours. 188,640 minutes. Whichever way you depict these stats they are a very long time in regards to a family with a child who has a life limiting illness. Compared to his peers these 4 months equate to years. Time is precious, every second of every day is precious. Since Alfie’s diagnosis […]

131 Days Later (part 18)

We are now entering the penultimate week of shielding. I’m running out of things to say in regards to our experiences without sounding like I’m repeating myself. So this will just be a short blog! Week 19 begins with almost the same feeling as Week 1, a degree of anxiousness hanging over the people who […]