Jude’s story

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. He is unable to move other than slight rocking and will never walk or talk. His parents, Dale and Mel, are walking the most difficult of paths knowing that they may one day lose their child.

Here they share about coming to terms with Jude’s condition and how support from Alexander Devine Hospice Service is helping them cope with everyday life…

Even a year on, we are still coming to terms with his condition and the impact on our family

“We were devastated when Jude was diagnosed with a form of Mitochondrial disease and even a year on, we are still coming to terms with his condition and the impact on our family. We are living every parent’s worst nightmare, knowing that one day soon Jude will not be with us.

“Our whole world changed when Jude was born. What should have been a time of joy and celebration quickly turned to shock and grief. It has been so difficult for us to process let alone knowing the right things to say to his older sister and twin brothers. It is so hard for them to understand why Jude will never do the things that they can do and how this impacts their lives.”

We have seen first-hand the amazing support they give families like ours and the real difference it makes

“Soon after Jude’s diagnosis we were referred to Alexander Devine Children’s Hospice Service. Initially we were worried when we heard we were being referred to a hospice as our first thoughts were ‘end of life’. However, we have seen first-hand the amazing support they give families like ours and the real difference it makes to the lives of children like Jude and his siblings.”

He gets opportunities to do things that other children normally get to do and that means so much to us

“The Alexander Care Team is amazing and we are so grateful to have their support, not just for Jude but for the whole family. For Jude, he loves his visits to the hospice as much as the visits from the team at our home. He gets opportunities to do things that other children would normally get to do and that means so much to us. The way he has responded to music therapy especially is incredible. His hearing is impaired but in these sessions his reactions to the sounds and instruments is really developing and brilliant to see.”

“The support for Jude’s three siblings has also been so important for us. For the past year, Catherine, Alexander’s play specialist, has been visiting Jude’s three siblings to provide them with support. They have also taken part in the sibling days held at the hospice, giving them a chance to meet other siblings in a similar situation to them.”

The chance to meet others who share similar stories is so reassuring

“For Mel and I, the support is amazing. The respite makes a massive difference to our everyday lives but also talking to the Care Team helps as they understand what we are going through. The whole team are all so professional, compassionate and understanding. We have loved coming to the hospice as well. It is so warm and friendly and talking to other parents who share similar stories to ours is so reassuring.”

“We cannot thank the hospice and its staff enough. It is truly a wonderful charity and as a family we are committed to helping raise as much money as we can so that it can continue its fantastic work and help families like ours.”

One of Jude’s regular carers from The Alexander Care Team is Amy:

“I love our visits with Jude as he gives the best cuddles and I know it is always going to be so much fun with him. Getting to know Jude and his family is such a privilege. He is such a special little boy and I love how at each visit he loves to show me how clever he is. At the hospice he loves the musical instruments and sensory toys, using his hands and feet to explore. When I visit him at home I always make sure we take with us lots of the messy, noisy toys and activities that he likes as well. Seeing his smiles and how he is starting to recognise our voices just makes my day”

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.