Susanne and Mia for Scope

A transcript of a video from Scope's YouTube channel


 

Susanne: Mia was kind of excelling at everything.

The health visitor she was very happy with everything.

You know great, things were ticking along.

All of that was taken away, just like that.

It was just taken away.

Mia has Rett syndrome, it results in significant developmental delay.

Sort of year and a half, two they start losing everything.

So she doesn't speak, she makes noises.

She has to work extra hard to do things that everyone else takes for granted, like sit up.

The diagnosis took some time to get that phone call in the middle of an open plan office. 

It was really, really difficult. 

My whole kind of world had ended.

It sounds really melodramatic but it really did feel like that, at the time.

She has a different future now, so what's that going to look like.

There was something that went through my head saying oh well you're not a real mum then and that's really toxic to carry that around, when of course I'm a real mum. but it's taken a long time to realise that.

I had to get through two periods of being really ill due to stress, because I just wanted to be independent and I could do it myself and I could manage and I'm sure a lot of people feel like that.

I got involved in what was termed a therapeutic writing course which was funded by Scope, which was absolutely fantastic.

A lot of the course was about how it feels to be a parent and what difference does it make if you have a disabled child. 

All of those feelings that you hold on to, all those negative feelings that are absolutely valid unless you get them out somehow.

This course was brilliant at that amd it wouldn't have happened without Scope.

It's changed my life.

Scope I think helps to change people's lives for the better. 

It helps to support people. 

Things always get better in ways you can't even imagine right now.

At Scope, we're about disability. Gifts left in wills by generous supporters really make a huge difference. Whatever the size, these gifts help to provide a brighter future for disabled people and their families such as Susanne and Mia. 

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