The Lundin family have been cared for by the Sussex-based charity since 2011 when they were seeking respite care for their youngest child.
Dad Jason explains “Eva was born 13 weeks early, not breathing, and spent the first 108 days of her life in hospital. She was tiny but she fought hard, she is now almost six years old and is a loving girl with Cerebral Palsy and chronic lung disease. She has come a long way since those early days, but she is still highly dependent on me and her mum for all of her needs. She cannot walk unaided, her weak chest means she is often dependent on oxygen, she is fed by a tube and she cannot speak to us. Of course, she communicates in her own way, and has even learnt a few signs, but caring for her is still hugely demanding.”
Jason gave up work to become Eva’s full time carer in 2011. “It’s definitely a lot harder doing the caring” says Jason. “As with any child, it’s all about getting into good routines, and luckily I have a highly-organised wife who takes care of that, but those routines are different when you are caring for a child with complex needs such as Eva. Seemingly simple tasks like doing the weekly shop or running errands were totally impossible without help.”
The family access a range of services at Chestnut Tree. A nurse visits regularly to take care of Eva whilst Jason and Mel spend some quality time together. “It’s wonderful” Jason says, “to start with, the visits from the Chestnut Tree Nurse gave us time to get everyday tasks done, but now we use it as precious time for Mel and I to spend as a couple, which is really invaluable. We’ve even managed to go to the cinema! That may sound bizarre but it’s something we simply hadn’t been able to do since Eva was born.”
It’s also given Eva’s brother, George, the chance to spend time with his parents. “It is inevitable that you end up spending the majority of your time looking after the more dependent child” Jason explains, “so during the school holidays I try to use our Chestnut Tree Nurse visits to spend some time with George, doing the kinds of things that aren’t that easy with Eva.”
The family have also spent time at the charity’s purpose built hospice near Worthing. “Eva loves it at Chestnut Tree House. She loves to swim, which is not the easiest thing to do with a child that needs the extra support of oxygen but the nurses at the house help her to make the most of the pool. A lot of the nurses at the House know Eva really well, and know what we have been through as a family, so it is always lovely to visit and allow Eva to spend some time enjoying herself there whilst we spend some time with George. The only problem we have is trying to persuade George to leave the House again!”
“Chestnut Tree does a wonderful job, offering so many great services to so many families across Sussex. Eva has built a really strong relationship with Louise, our community nurse, and we know that the team can handle any situation that arises whilst she’s in their care.”
As for Eva, her future is looking bright. “She’s just strong enough to get into the kitchen cupboards now so it looks like we’re going to have to child-proof everything again. And she has her powered wheelchair now, so there really will be no stopping her!”
Chestnut Tree cares for 300 children and their families across Sussex and never charges for its care. It costs well over £3.5 million every year to offer these services and less than 7% of its funding comes from central government, meaning it relies heavily on the generosity of the local community.
“We are so proud of Eva and George and will treasure this film forever. Please, please tell as many people as you can about it - like, share, tweet, retweet, comment – and help Chestnut Tree reach more children and families like us that need them. Thank you so much!”
Member since: 11th February 2016
Chestnut Tree is the children’s hospice service for East Sussex. Each year, they look after hundreds of local children with life-shortening conditions, their siblings and families, giving them the chance...