Sheffield mum on tot's extremely rare genetic condition

Amy Cookson has spoken to The Star about her two-year-old daughter Rowanna's diagnosis of CTNNB1.

Transcript

00:00I'm Amy and this is Rowanna. She's two and a half. She's got CTNN B1 syndrome, which is a neurodevelopmental disorder

00:10that affects her muscles and anything to do with her movement, digestion.

00:17She's non-verbal and she's fed through a PEGJ, which is interval.

00:24This little one is, from the moment she opens her eyes to the moment she finally goes to sleep at night,

00:30she's on the go. She's always moving. She's always up to no good.

00:37And then the others come home from school and it gets even busier.

00:44For you Amy, what is life like as a parent of a disabled child?

00:48Isolating sometimes. It can be lonely. I've got an amazing family around me and I'm so grateful for that.

00:59I can't imagine what it would be like for the people who don't have family support.

01:05Everything's just ten times harder when you've got a disabled child.

01:11And half of the time it doesn't have to be ten times harder.

01:14It could be a lot simpler, but everything is more difficult.

01:22If you could make one change, how the world coordinates itself around disabled people, disabled children,

01:29what would you change?

01:31There wouldn't be a divide between disabled and abled.

01:35We'd all just be people and the world would suit all of us.

01:39There wouldn't have to be a disabled toilet or disabled facilities.

01:44Everything would be accessible for everybody. You wouldn't need to be segregated.