Harry, who just celebrated his 4th birthday, is a happy little boy who loves to read books, zoom around in his wizzybug car and play with his sisters.
But his life is very different to most children his age. He was born with a rare neurological condition called Moebius syndrome. It means he can’t smile, blink or move his eyes. He is also very weak and can’t sit up or walk. He struggles to swallow so is fed through a peg tube.
Despite being in and out of hospital for most of his life due to a number of complications including severe sepsis, Harry’s family are determined to make sure Harry has every opportunity to experience things other children his age do. Visits to Alexander Devine’s hospice help them do just this. It is not just an opportunity for much-needed respite for his parents but also the chance for Harry to have fun, whether that is splashing in the pool, playing in the playground or exploring the sensory room.
Harry’s mum Jenny said:
“Harry really loves coming to the hospice, especially the amazing hydrotherapy pool and sensory room. His sister sometimes joins him and she loves it too. It’s lovely knowing he is getting looked after by great staff whilst we can get some respite from the day to day caring of Harry”
Need our help?
The word hospice should not seem scary and getting support from us doesn’t have to mean a child’s death is imminent. Helping to enrich the lives of the children and their families is at the heart of our service, our end of life and bereavement support is just a part of what we do.
Our children’s hospice service covers the whole of Berkshire and the surrounding counties. Anyone can make a referral to Alexander Devine Children’s Hospice Service and if you think your child may be eligible for our services, please do get in touch.
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