Archie’s story: “I couldn’t live without their support”
This is Archie’s story, told by his mum, Laura.
Archie was born extremely prematurely at 23 weeks, severely deprived of oxygen. He suffered brain damage which resulted in multiple complex medical needs including a tracheostomy to help him breathe, and a feeding tube to help him eat.
Archie was later diagnosed with Cerebral Palsy, a lifelong condition that affects his movement and co-ordination, and due to the severity of his condition it is unlikely that he will reach adulthood.
Archie spent the first 11 months of his life in Bristol Children’s Hospital, where he almost died a number of times. But thankfully, after having two life-saving operations, his family were able to bring him home – just in time for his first birthday: “It was a day that we never thought would arrive, and then suddenly it was here. We were allowed to take him home, to be a proper family,” explains Mum, Laura.
However, this was only just the beginning of their journey. The transition from hospital to home for a family with a life-limited or terminally ill child is an incredibly tough one. Archie was still attached to so many wires for monitoring, he was fed via a feeding tube, had a tracheostomy to help him breathe, and was still on oxygen 24/7. They didn’t know how they were going to do it with such an unwell child.
Luckily, that’s where Jessie May stepped in.
“Jessie May had been visiting us in hospital since Archie was six months old, so we knew the team and trusted them. They helped us with the transition from hospital to home, and gave us all the information we needed about their services and all of the support they offer. They were a lifeline to us at a really difficult time.”
Jessie May have continued to visit the family, offering respite for his parents: “They come and look after Archie so I can have a short break. As the years go on, caring for a disabled child is exhausting both physically and mentally. The truth is that I couldn’t live without their support.”
The staff at Jessie May allow Laura and her husband to take time to be a couple, to go to the cinema or to the pub. They have also supported the family to take Archie to hydrotherapy: “They have enabled us to do things that otherwise would have been impossible.”
The hospice also hosts events, for families to meet other parents: “It can be really difficult to hang out with friends because of all the steps involved in just getting there. But the Jessie May events are different. There are nurses there to help if you need it and other people in your situation too. Sometimes, with a disabled child, it can feel like you are talking another language. But these other parents just understand.”
