Team Jude’s 100 marathon challenge

Mel and Dale Simkiss are walking the most difficult of paths knowing that they may one day lose their child.

In June 2018, the Simkiss family received the devastating news that their precious little boy was unlikely to live past his childhood. Jude, the youngest of four children, was born with a rare genetic disorder affecting his brain called Mitochondrial disease. He is unable to move other than slight rocking and will never walk or talk.

This Mitochondrial Disease Awareness Week, Jude’s father, Dale, along with six friends, are taking on a massive fundraising challenge to raise awareness and vital funds for the charities that offer his family vital support. Team Jude is currently undertaking 100 marathons in 100 days, which will culminate with Dale taking on the virtual London marathon on 4 October carrying a 16kg rucksack on his back, which is the equivalent weight of his son Jude.

Dale said:

“If you watch Coronation Street, you will be aware of the storyline of Oliver, his diagnosis of Mitchondrial disease and his parent’s anguish about turning his life support off.

 

My family live this reality, knowing that one day we may have to do the same.

 

My son Jude, who is nearly three, has Mitochondrial disease, a life-limiting and debilitating condition for which there is no cure or treatment. He is almost completely disabled and will never walk, talk, see or experience most of the things we all take for granted.”

Team Jude is raising money for Alexander Devine Children’s Hospice Service which supports the Simkiss family, along with Lily Foundation and Genetics Disorders UK. To support Team Jude in their marathon challenge, please visit their fundraising page: https://uk.virginmoneygiving.com/TeamJude 

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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Last week we had the pleasure of welcoming the Mayor of the Royal Borough of Windsor & Maidenhead, Cllr Christine Bateson, to our children’s hospice in Maidenhead.

It was a wonderful opportunity to show her our amazing state-of-the-art facilities and talk about the vital support we give to local children and their families, all made possible by donations and fundraising.

There are many misconceptions about what children’s hospice care is all about. Not many people understand the all-encompassing care that children’s hospice services like ours provide to children with life-limiting and life-threatening conditions, and their families. As well as the specialist clinical care, our holistic and bespoke approach aims to provide the best possible support for each child and family. This includes support such as much-needed respite, specialist play for children and their siblings, symptom management, family support services, end of life care and bereavement support. As well as at our children’s hospice in Maidenhead, Alexander’s Care Team provides support in the family home and the community, including hospitals and schools.

With facilities at our hospice such as a hydrotherapy pool, sensory room and accessible playground, we offer opportunities for children and their siblings to experience fun, joy and adventures, and help families make precious memories for as long as they have. For some of these children and their families, we will support them for many years, for others it may be a shorter period of time.

During the visit, our CEO Fiona introduced the mayor to our some of our wonderful volunteers and members of Alexander’s Care Team. However, we think it was Thomas and Keanu’s big smiles that definitely proved to be the highlight of the visit!

#royalboroughofwindsorandmaidenhead #childrenshospicecare #specialistcare #localcharity #lifeatourhospice
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We were very grateful to receive a donation of amazing mental health awareness self-care packages from Charlotte, founder of a lovely local small business called MindFill. They work with a range of clients to curate beautiful and bespoke branded care packages to help with employee wellness.

Thank you for thinking of us, what a lovely treat!
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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.