Brave little Eva Lundin who was born 13 weeks premature needs help to walk, is fed by a tube and is unable to speak at the age of four.
She has cerebral palsy and chronic lung disease, which requires round the clock care from her parents Jason and Mel, both 40, from Barcombe.
Her dad gave up work in 2011 to become Eva’s full time carer and he praised the support they received from the Chestnut Tree House near Arundel.
The charity has helped look after Eva, giving the couple precious time to spend together and with their son George, aged six.
Jason, of Bird Hole Lane, said: “It’s definitely a lot harder doing the caring. 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 House Hospice.
A nurse visits regularly to take care of Eva whilst Jason and Mel spend some quality time together.
“It’s wonderful. 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.,” said Jason.
“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 has also given the couple the chance to spend more time with George.
Jason explained: “It is inevitable that you end up spending the majority of your time looking after the more dependent child, 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 has spent time at the charity’s hospice which cares for 300 children.
“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,” said Jason.
“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!”