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5 days ago2 min read
Fighting for Ben: The Cruel Reality of Delays – Time is Muscle
Every morning, I watch my son, Ben, pull himself up to stand. At 11 years old, we are lucky he still manages, but I see the effort it...
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Jun 20, 20222 min read
It's lonely being busy
As I reflect on another busy week and weekend of work, gym, family time, volunteering work and additional, unpaid side-projects, I sit...
221 views
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May 11, 20217 min read
I am Not OK with this rollercoaster. I'd love an average day.
I cried today – in public and when I say in public, I mean in the school playground picking up Ben from school. Why the fuck am I crying?...
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Jun 16, 20204 min read
Getting by in Isolation - The Ramblings of a Duchenne Dad
As I sit here on day 92 of lockdown, I feel the need to put the proverbial 'pen to paper'. What do I really want to say? What message do...
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Jan 5, 20181 min read
Our New Duchenne Family
Following diagnosis, both my wife and I dealt with the news in our own way. There was one thing we had in common, it's a grieving...
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Sep 29, 20171 min read
The Beginning
in August 2017, Ben was referred to a Paediatrician due to his propensity for falling over and hitting his head. Little did we know that...
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