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 […]

131 Days Later (part 17)

How are you? I trust you are well? For those of you who have been homeschooling, I can sense the relief and the feeling of that being weight lifted from your shoulders! We are safe in the knowledge that we can all hand our kids back to the teachers in September! Phew! Aside from trying […]

131 Days Later (part 16)

What we’ve watched during lockdown The last three months have been very challenging in so many ways, aside from watching far too many YouTube channels during the day (not by choice may I add!). One thing we have enjoyed during the evening is switching off when the kids are in bed and getting stuck into […]

131 Days Later (part 15)

On Wednesday we woke up to day 100 of lockdown. Yes you read it right, ONE HUNDRED DAYS! Let’s just say it has been an interesting time! It has been a massive test, a test of our resolve, our resilience, our patience, our relationship, our character, our teaching skills, our parenting skills. I could go […]

131 Days Later (part 14)

On Thursday we received a letter from the Department of Health & Social Care advising us that we would be required to shield until 31st July. What started off as 12 weeks in lockdown will in the end turn out be almost 19 weeks. I’d like to know why the general public can go and […]