Scheherazade's story

Rebecca says: “We call Scheherazade, Pix – short for pickle! She’s a very happy little girl. She’s very giggly – when’s she happy, your world just lights up. There’s something about that giggle, that smile, that takes your heart a little bit. She’s very cute - she’s just a little bit different.

“Life is impacted by having a child with complex needs. Your sleep does take a hit, and you’re a lot more anxious, because you know that things can go quite quickly downhill, so you’ve always got to be on call, you’ve got to know what to do. And the admin! It’s every day – emails, calls, there’s always something. But you just kind of get on with it – you have to. You just have to try and be really organised and on top of it.

“Demelza really helps with all of this, because they understand the situation and can give you advice, because they know how it all works.”

Even though life can be complicated, one of the most important things for Scheherazade and her family is having fun together.

Rebecca says: “The care and support you get from Demelza is specialist – they understand your child and they understand your circumstances. It’s that mixture of specialist care, but also fun as well! They bring joy into your family. Even just playing with the children - they are children and playing is what they’re meant to do!"

Because of Scheherazade’s complex condition, being able to access different sensory experiences is really valuable.

Rebecca says: “Scheherazade really enjoys the sensory room at Demelza. She loves the lights, the fibre optics, the magic carpet projector on the floor which changes and moves when you touch it. She loves anything sensory like that.

“We also used to have dance therapy sessions which Scheherazade absolutely loved. Most kids can dance or move before they can talk, so things like dance therapy, it’s a way of expressing. As she’s non-verbal, Scheherazade expresses herself in a different way, so dance gives her that different avenue.

“She has hearing aids, so she can hear and she loves music. She’s always boogie-ing away to music, especially at the Demelza discos! The parties at Demelza are amazing and you get to see other families like you, which is good.”

As well as supporting Scheherazade in day-to-day life, Demelza has also been there for the whole family during some really special moments.

Rebecca says: “Demelza also supported my parents when they looked after Scheherazade and her sister Isadora while Montgomery Leopold, our youngest, was born. For most children, in a pinch you could probably get a babysitter or something, but with Scheherazade, because she’s just that little bit more delicate, we need specialist help. Nobody can do Scheherazade’s suctioning apart from me, and she needs suctioning at night, so our Demelza nurse came to support my mum with that more specialist care.

“Mum knows Scheherazade really well, so she’s quite confident looking after her, but that was the one thing she was worried about – it was good for her to have that support just so she felt a bit more secure about looking after the kids.”

Rebecca’s mum, Kate, says: “When their third child Montgomery Leopold was born Demelza was amazing. I was looking after Scheherazade and Isadora while Rebecca and Chris were in the hospital, but I’m in my 70s and I just know I can’t do what I could do 10 years ago, however hard I try.

“I’ve been doing the feeds since she was really tiny, so the biggest worry wasn’t that, but the suctioning at night. So we asked Demelza to support us that night. Our Demelza nurse turned up just as Scheherazade’s nanny left - she did Scheherazade’s suctioning and nebuliser and helped me get her into bed. She’s getting too heavy now for me to do that on my own! If Demelza hadn’t been there, I would have really struggled.

“Our Demelza nurse also went through everything with me about a month before – she made sure she came round on a day when I was there and stayed for a while just to make sure I was OK with it all. That really put my mind at rest, because it meant I had support the whole time.”

For Rebecca, it’s that support and reassurance that makes life a little bit easier.

Rebecca says: “Demelza just helps families to live a more comfortable, enjoyable life with their kids. You’re able to do more, it makes life more accessible - it’s a helping hand for your family. And it’s fun as well! Everyone’s really kind, which makes a difference when you’re up against it – it’s really nice to have people that understand your situation and give you the support that you need.”