16/08/2026
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When Fear Comes From Experience — Why Falls Matter in Duchenne
Three years ago, I wrote about Joshua’s fear of falling from the ramp of our accessible van. It wasn’t a “typical” fear. It wasn’t nerves. It was real, rooted, lived — and honestly, frightening for us as parents too.
Back then, I shared the story of Hunter, a brave 14‑year‑old boy whose wheels caught gravel on a ramp and sent him forward with his chair still attached. He fractured both legs, his ankle, and his shoulder. He prayed through the pain, worried more about his little sister than himself. His mum, Kim, did everything right — pressure on his head, calling for help, keeping him calm.
Less than 24 hours later, Hunter passed away. A fat embolism. A tiny piece of fat released into the bloodstream after a fracture — something heartbreakingly common in Duchenne — travelled to his lungs and stopped his body getting enough oxygen.
He was 14. Forever 14.
Just six months later, it happened again.
Another young man, CJ, also 14, also with Duchenne, also after a small fall. A slight break in both femurs. Neurological symptoms. Sedated. Intubated. And then he “fell quietly asleep,” as his mum said.
CJ was creative, funny, sarcastic, kind — a gamer, an artist, a boy who lit up his world. Much like Josh.
These stories stayed with me. They stayed with Joshua too.
Because when Joshua broke his hip and femur, these weren’t distant tragedies — they were warnings. They were reminders of how quickly things can change, how essential it is for Duchenne parents to recognise the signs, speak up, and insist on being heard.
And that’s exactly what we did. I watched him like a hawk in hospital. I still do.
Falls in Duchenne aren’t “just falls.” Fractures aren’t “just fractures.” They carry risks that most people — including many medical professionals — don’t fully understand.
Fat embolism syndrome is rare in the general population. But in Duchenne, it is not rare enough.
It is why our boys fear ramps. It is why parents fear ramps. It is why vigilance isn’t paranoia — it’s survival.
Today, I want to honour Hunter. I want to honour CJ. I want to honour every family who has lived through the unthinkable.
And I want to remind every Duchenne parent, carer, friend, and professional:
If a child with Duchenne has a fall, a fracture, or sudden changes in breathing, behaviour, or alertness — act fast. Push for answers. Push for monitoring. Push for what you know.
Our children deserve that protection. They deserve that awareness. They deserve to be safe.
Joshua is slowly still recovering. He is healing. He is fighting through the constant pain. But the echoes of these stories stay with us — not to frighten, but to guide.
💙 In memory of Hunter — forever 14. 💙 In memory of CJ — forever loved. 💙 For every child living this journey. 💙 For every parent carrying the weight of knowing.
