"...she can't walk, she can't talk – but she's probably the strongest person I know."
It's intense. It's loads of challenges, often with people's perception of her so they look at Ruby and they see wires, they see tubes.
They don't see a nine year old girl and she's extraordinary and that's what I see. And that's what CHAS sees. CHAS have supported us over the last eight years.
To be honest, I don't know where I'd be without CHAS. We're using the At Home team and also respite at Rachel House. When you come here, it's like you can just totally relax. People just understand without you having to express it.
I love Christmas, it's the best time of year. It's a joyous time. Before CHAS it still had the practicalities, things still had to get done.
With the CHAS at Home team, they will come in and they will set up the tree and on my tree I have a handmade decoration that Ruby and Riley have done with the CHAS team every single year and I swear it's the best part of my Christmas so each Christmas is a success.
So I'm asking you to please donate to CHAS this year for their Christmas appeal, whatever you can afford. Everything you give goes towards making memories and creating special moments for families like ours where we don't know how much time we might have left with some of our children.
Please donate to CHAS today.
Pauline – Ruby and Riley's mum