A day in the life…

Waker upper, dresser, breakfast maker, medicine giver, brew maker, employee, role juggler, house tidier, listener, dedicated driver, problem solver, sleep sacrificer, night watch person. This list could go on and on. These roles define just some of a carers duties in a typical day. You’ll notice I used a Beatles song as the title of […]

A New Kind of Normal

In his short time on planet earth Alfie has endured a lumber puncture (which thankfully led to him being lactose intolerant and not meningitis as first feared), he’s suffered a broken collarbone, a diagnosis of a life limiting illness and to top it all off, he’s currently living through a pandemic! He could write a book […]

52 weeks later – a brief reflection.

Today (23rd March 2021) marks the first anniversary of lockdown in the UK. A National Day of Reflection (spearheaded by Marie Curie) will be held to reflect on our collective loss, to support those who have been bereaved and to provide hope for a brighter future. A minutes silence will be held at 12pm and […]

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 […]