Anouk

Dear sister,

My beautiful sister, three years older than me.

Even though there were worries about you when you were young, because you couldn’t quite keep up with the rest at school. No one ever imagined that this might be connected to the muscle disease MD, which we only discovered within our family much later.

When mum told us that the muscle disease she turned out to have was hereditary, she wanted us to get tested beforehand if we wanted to try to have children.

She thought it was terrible that she might have passed a muscle disease on to us. You had always wanted children so badly. Becoming a mother seemed to you like the most beautiful thing there was. And that’s why you got tested. The result of your test came at our mother’s funeral. It was only then that we truly realised the disease was fatal. And that made the news that you had it too incredibly hard to bear. You were always the optimistic one and didn’t see the growing problems with swallowing, walking and lifting. Your first son died a day after birth from MD. Thankfully your second son doesn’t have it, and he’s now a tough teenager. Sadly you’re not here to see it, because your heart stopped when he was 7 years old.

To try to prevent this kind of family tragedy in the future, I’m committing myself to MD – I say your name and share our story to turn your death into something worthwhile. Raising awareness of MD to raise money to make the development of medication possible. So that this generation can be the last one with MD.