We had the wrong assumption that children just went to Brian House for end of life care. How wrong we were!
(Written by Charlie’s Mum, Sarah Barker)
Charlie was born prematurely in October 2011 with birth trauma injuries which resulted in cerebral palsy, chronic lung disease (Charlie required oxygen on a daily basis), epilepsy and severely impaired hearing and vision. He was tube fed, unable to talk, walk or literally do anything for himself. It was the type of thing you see on Children in Need each year and never expect to happen to you. It made us realise that life changing events can happen in an instant.
Charlie spent a turbulent seven months in Royal Preston and Blackpool Victoria Hospital (with frequent stays in Alder Hey) before being discharged home in May 2012. His paediatric consultant referred us to Brian House to use their free services – they realised how much care Charlie would require and how, as Charlie’s parents, we would need respite care. We were initially reluctant to take up this offer as we had the wrong assumption that children just went to Brian House for end of life care. How wrong we were!
After surviving on a maximum of four hours sleep a night for a few weeks, we started using Brian House and quickly realised what a professional, fun and happy place it is. These special children could receive the care and support they required whilst enjoying themselves. Meanwhile, their parents/carers could have some well-earned rest, or do jobs that couldn’t be completed when the children were at home. Brian House provided us with respite care one day a week and regular overnight stays. We met other parents in similar positions who have become friends and act as a great support network. Brian House enabled us to get some much needed rest and even have an occasional holiday. They held Christmas and Easter parties with presents for children and siblings.
Charlie passed away in March 2016. Brian House provided a bereavement suite where, as a family, we could spend time with Charlie and even sleep there with him prior to the funeral. Without the support of Brian House both during Charlie’s short life and immediately following his passing, we really could not have coped. The staff and volunteers do a truly amazing job, and Brian House is exceptionally well run. Our family are indebted and will be forever grateful to the team for all they did.