Harry

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 into surrounding counties. If you think your child may be eligible for our services, please do get in touch.

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Playtime just got more magical at our hospice!✨

Thank you so much to Lifelites for their latest donation of assistive and inclusive technology to help enrich the lives of the children and young people that we support.

Today Lifelites has been training members of Alexander’s Care Team on how to use all the new equipment and toys including Eyegaze which helps children with limited movement or restricted speech communicate and take control for themselves, using just the movement of their eyes. With most of the equipment easily portable, it means there are no limits to where and when we can play!

It was wonderful to be joined by some of our families to celebrate the donation of this new technology and, of course, have a play!

#lifeatourhospice #childrenshospicecare #magicalmoments #assistivetechnology
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We are so grateful to the National Lottery Awards for helping to fund the important development of our Family Support programme.

The increased need to develop our Family Support programme has been driven by an increasing number of children with complex needs and a rising number of bereaved families. Thanks to National Lottery Awards’ generous donation of £9,250, we are able to widen the support we can give families including the recruitment of our Family Support Worker, parent group meetings and special events such as our remembrance days.

The National Lottery Community Fund
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📣Please join us in giving our amazing London marathon runners a big cheer! 🙌

Tracey, James and Fraser - we are so proud of you and wish you the best of luck for today.

Go #TeamDevine!

#fundraisingheros #marathonchallenge #londonmarathon2022
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Alexander Devine Children’s Hospice Service is the operating name of Alexander Devine Children’s Cancer Trust. A company limited by guarantee registered in England and Wales No. 5757493

Copyright © 2019 Alexander Devine Children's Hospice Service. UK Registered Charity No. 1118947.