“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 11 year old boy. 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.
Everything Marcus has learned to do in the first decade of his life is gradually being taken from him.
In March this year he learnt the 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.
We have not been able to use the facilities as much as we would have liked this year due to being in lockdown and having to shield because of Covid-19. But the times we have visited have been amazing memory makers.
Like most children, Marcus adores Christmas. It is heart-breaking because I know we will be reminded how different things are this year for him, but we won’t let that us stop making it magical for him. He deserves this and every day to be special”
This Christmas, help us to continue to support families like Marcus’s, helping them to make the most of the time that they have together.
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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Copyright © 2019 Alexander Devine Children's Hospice Service. UK Registered Charity No. 1118947.