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”
Please help us be there
The specialist care and support we provide to families like Jude’s is free of charge but it currently costs our charity over £2.8million each year just to maintain our current level of care.
Our charity receives minimal statutory funding and is nearly entirely reliant on donations, fundraising and gifts in Wills to fund our vital service. In fact, 50 minutes of every hour of specialist care and support we provide to each child and their family is funded by the kindness and generosity of our supporters.
Help us continue to be there for families like these and reach out to even more that need us: www.alexanderdevine.org/give
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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Copyright © 2019 Alexander Devine Children's Hospice Service. UK Registered Charity No. 1118947.