There are so many families out there who love and care for someone with Rett Syndrome.

A million different stories.

But the only one I can tell you about is mine.

I can tell you that before I was born, my sister was sick with something we all had been told was incurable.

I can tell you that before I turned 6, I was already angry that my sister couldn't speak, or clothe herself, or walk unassisted.

I can tell you that before I was 10, I could tell her condition was getting worse, as she couldn't eat solid foods and lost the ability to walk altogether.

I can tell you that before I was 12, my family had already gotten chronically ill from looking after her. And that when I was 11, it got so bad she had to be moved into care.

I can tell you that before I turned 15 I had already prepared a speech for her funeral.

And I can tell you that before I turned 20, I'd already had times where I thought I'd have to use it.

But, I can also tell you that for a long time now, we've had hope. Hope that has matastisised.

I can tell you that before I was 5, scientists reversed rett syndrome in mice in a lab.

I can tell you that before I was 10, we had Reverse Rett.

And I can tell you that before I'm 22, the first clinical trials in humans have started for Gene Therapy.

And now, I don't know when, but I am convinced we will have a cure.

The worst thing I can imagine is not knowing about any of this research. Not having this hope.

So we need to tell more people about Rett Syndrome.

There are families like ours who love someone with a disease they don't even have a name for.

Share this story and your own.

Because the truth is, even though there are a million "my stories"; There's really only one.

And it's our story.

And every day, it sounds a little more hopeful.