Help Families with a Sick Newborn Baby in Hospital

My baby Freya was born blind, deaf and diagnosed with Cockayne’s Syndrome, a neurodegenerative disorder. This is how we managed to cope, with our amazing Family Support Worker, Janet.

As a baby Freya didn’t sleep at all. That first year is a blur – there was no time for anything, the house was a mess, we were a mess. We had hospital appointments, we had to sort out my mum’s funeral. Every week there was bad news. Hospital appointments got worse because Freya was always getting sick, I was stuffing her into a baby carrier or buggy trying to get her on the tube – her immune system was getting so weak and she picked up everything. It was hard and we knew it wasn’t going to get easier.

Someone mentioned Rainbow Trust Children's Charity to us but I still didn’t think I needed help. I thought I had to do everything. Eventually I gave in and Janet, a Family Support Worker, came to help.

Janet said she’d come around to introduce herself and that first day, she got on so well with our son Adam that they went off to the park together.  He couldn’t stop talking about her. I didn’t know how much we needed her until we had her support. I was juggling far too much, nothing ever got finished. It’s just being able to do things that other people do. She’s even promised me that we might even go to IKEA as I need to get storage and I don’t drive and my husband Dean just hates the idea of it.

We’re comfortable leaving Freya with Janet, which means we can go out as a family sometimes. Although Freya is four years old, she only weighs 14 pounds so she can’t always join in but at least we can be there all together.

Even if I need someone to talk to, I can phone her up or text her. She does some of the stuff that my mum would have done, like taking me to the hospital and phones to make sure we’re OK.  She helps out with appointments and she sits and listens to me. We have a laugh and a joke which I don’t do enough.

Janet’s there as much for Adam as she is for Freya. He needs that and we need to know that I can let him go off with someone and go have fun. He knows he’s safe with her and enjoys her company.

Janet goes above and beyond. She doesn’t just check in or out. If there’s an emergency, she’ll come and pick Adam up for me.  She will help whenever she can.

We were so lucky to get Janet. She’s like family now. I can’t imagine her not being around. Even after Freya, she’ll still be part of it and will always be welcome in this home. She’s made life so much easier for us. I think she was made for us – she’s brilliant.