Alfie is 7 and has cerebral palsy caused by brain damage during a very difficult birth. As a result, he is unable to stand, walk, sit, roll or even play with his toys on his own. He has epilepsy, hearing difficulties and is fed via a gastrostomy. He is susceptible to chest infections and has had many stays in hospital.
Alfie needs 24 hour care for all his personal and medical needs. Alfie’s Grandad has given up work to help care for him in the evenings. Alfie has 2 younger brothers, Harrison and Joshua.
When Alfie’s night carers are unavailable the family book respite stays at Naomi House, these stays enable the family to just be a family. Mum Samantha said: “Quite often we do feel like carers to Alfie and so it is nice to be able to go to Naomi House and just be mum and dad.”
Naomi House offer activities which would otherwise be impossible for the family to enjoy: “We go swimming at Naomi House which is just wonderful. This is usually something that would be impossible but the hospice take the worry out of it. They do everything. Once the worry is gone, we just get to enjoy being a family together, taking part in loads of fun activities together.”
The family haven’t been able to go on holidays because of Alfie’s medical complexities and so to the family, their stays at Naomi House feel like a holiday: “One of our other sons says that he would like to go on a plane, or go on holiday which is very difficult. But Naomi House is his favourite place and he gets so excited when we go. It isn’t just Alfie benefitting from our stays.”
Mum Samantha worries that Alfie’s siblings are missing out because Alfie’s care requires so much time: “If Alfie is poorly he requires regular hospital stays and so the boys are pushed from one person to another. I feel very sad for them sometimes but they benefit so much being Alfie’s brother too. They are very sensitive to his needs.”
Isolation has been hard on the whole family. Samantha and her partner are now working from home while managing Alfie’s care and looking after their other sons. “We are just making the most of it. We haven’t ever been able to spend this much time together as a family since Alfie started school but I do feel very anxious at the moment. We can’t wait for our next respite break, it will be very much needed when isolation is over.”