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.

Ben and I have three beautiful children; Chelsea is eight, Leo is two and a half and Elliott is 16 months old. 

When Leo was born, he spent four weeks in intensive care. He was quite floppy and had to be tube fed. As he grew, he couldn’t crawl or roll over, and he slept for 19 hours a day. He was diagnosed at 14 months old and Elliott was born just two months later. 

Leo and Elliott both suffer from Glycogen Storage Disease, a genetic and metabolic disorder. Without the right level of food and drink, at exactly the right time, their blood sugar levels fall and they could become seriously ill very suddenly. They need to eat a controlled diet every two hours – day and night. 

Our Community Nurse recommended Rainbow Trust and soon after, Family Support Worker Claire, started supporting us. She visits regularly, spending time with the children and helping Ben and I around the home. We were struggling with hospital appointments, school runs and everything else that needed doing. Ben had to leave his job to help care for the children, so we’ve struggled financially too. 

Claire can tube feed the boys, which means she’s able to take the children for whole days out. This gives us both valuable time to do things like pay bills or do the food shopping. It gives us some much needed respite too. 

Rainbow Trust came into our lives just when we needed them most. Claire has made life much more bearable and given us more precious time with our children. Having someone like Claire at such a difficult time has meant so much to all of us. I wish that all families struggling to care for their seriously ill child could have a Rainbow Trust Family Support Worker. You make this happen by supporting their fantastic work, reaching those who need help the most.