Marcus

“We are concentrating on making amazing memories with Marcus so that when the dark days hit, we can reflect on all the good times we had”

Marcus’s Mum, Marie

Marcus is a funny, smiley and happy teenager. Like most boys his age he loves playing computer games and enjoys nothing more than playing in the park or with his beloved cat Pebbles.

But Marcus’s life is sadly anything but ordinary. He was diagnosed late with Duchenne Muscular Dystrophy, a rare progressive muscle wasting disease. It means that everything Marcus has learned to do in the first decade of his life is gradually being taken from him.

In March 2020 he was given the devastating news that he will never walk again and is now reliant on a wheelchair. There is currently no treatment and no cure.

For children like Marcus, every day really does count.

At Alexander Devine, we can’t change Marcus’s diagnosis, but with your support we can help him and his family make the most of their time together and give every opportunity for Marcus to live the full life he deserves.

As his condition changes, we can help make more things possible and accessible to him so he can keep doing the things that he loves, no matter what.

Marcus’s mum Marie told us:

“We are concentrating on making amazing memories with Marcus so that when the dark days hit, we can reflect on all the good times we had.

The hardest bit was telling Marcus that he will never get better and he knows he will never walk again. Walking and running about playing with his mates is what he misses most.

But Marcus is amazing and just faces life with such positivity. Nothing fazes him and he is always smiling and trying to make us laugh.

Being at Alexander Devine means so much to us as it gives Marcus the chance to do ‘everyday’ things that he loves but sadly can’t do elsewhere anymore. Taking him to the park several years ago was not a problem. But now trying to transfer him from a wheelchair into a swing or roundabout is a huge struggle and it is horrible as people just stare and I have to explain why to Marcus.

At Alexander Devine there is no transferring as it’s just so accessible and there is not staring just lots of smiles. He really loves coming to the hospice, it just really opens up his world. He loves playing in the playground and being able to swing or bounce himself, exploring the sensory garden with its fun lego characters and then splashing about in the pool. Whilst he can no longer stand on his feet, when he is in the water he can. And that is so special for him.”

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Help us continue to be there for more families like Marcus’s. By making a donation today, large or small, you will be providing specialist care and vital support for families who care for children with life-limiting and life-threatening conditions.

Donate now

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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Talia’s got something exciting to tell you… Tickets for our Big Curry Night at the hospice are on sale! 🍽🍛

We’re thrilled to share that our wonderful friends at Wokingham curry restaurant, Sultan will be cooking up a delicious Indian banquet for guests to enjoy this year.

Take a sneak peek at the menu and book your place 👇 alexanderdevine.org/2023/01/bigcurrynight/
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🛒Your weekly shop could help raise money for Together for Short Lives and children’s hospices like Alexander Devine at no extra cost to you!

If you shop at your local Morrisons and buy from their Every Pack Gives Back range throughout February, a donation will be made to Morrisons' charity partner, Together for Short Lives.

This fantastic partnership is raising vital funds for children’s hospices up and down the country like Alexander Devine, helping us deliver specialist care for local children with life-limiting and life-threatening conditions, and their families.

Children just like Pippa, who needs round-the-clock care:
“Alexander Devine's support is invaluable. They are there through all sorts of different issues, whether it be emotional support or medical advice, and that’s not just for Pippa but for all of us. It’s brilliant how they provide this hug.” - Danielle, Pippa's mum
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Are you a nurse or carer interested in working in children's palliative care?

Come along to our Careers Morning at our Maidenhead children's hospice on Saturday 4th March to find out about the varied, exciting, and rewarding roles available.

This event is aimed at student nurses, Band 4 Nurse Associates, Band 5 and 6 Nurses, Band 3 and 4 Carers, and Nursery Nurses.

Book your place by emailing ameliap@alexanderdevine.org or please call 01628 822777 for more information

www.alexanderdevine.org/events

#nursejobs #carers #childrenshospicecare #palliativecare #nurserynurse #SpecialPlaceToWork #Berkshirejobs
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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.