Help Families with a Sick Newborn Baby in Hospital

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.