“My son’s biggest wish is for ‘a new medicine because then he might be quicker on his feet.’ It breaks my heart he’s being denied that chance” – waiting for givinostat
“I’ve written the book I wish I’d been able to read growing up.”
By amber sunner
“Whilst there is no cure, the managing of the conditions has improved a lot. For example, Joe’s been taking preventative heart medication thanks to previous clinical trials.”
By ellen moye
“We’re keeping Stuart’s memory alive with a gift in our Will”
By ellen moye
“Inspired by his courage”: Running the London Marathon in memory of my brother
By amber sunner
“My son has played wheelchair football for England all around the world – find your child’s passion and they’ll be unstoppable.”
By amber sunner
“I’ve been a single mum for 40 years and have three children, two with Duchenne” – here’s what I wish I’d known.
By amber sunner
“Vamorolone helped my son maintain his independence”
By amber sunner
“I carry his memory with me every day”: a tribute trek for my brother
By amber sunner
“I put extra blankets on because we can’t afford the heating – but it means I can’t move”
By ellen moye
Running 53 miles in support of my brother
By amber sunner