Two young sisters sit at the table lost in concentration as they apply glitter – lots of glitter – to their colourful pictures. Their big brother has just vanished back to his favourite PlayStation game; mum and dad are chatting about their plans for the rest of the day.
It’s a typical scene of family life played out in homes up and down the land during the school holidays. But this particular scene is taking place at Demelza– and the normality of it all is what makes it so special.
One of the little girls enjoying the art room is Giorgia, aged seven, from Hastings. When she was two weeks old she stopped breathing and was rushed to hospital – the beginning of what turned out to be a long and frustrating journey to find out what was wrong.
Numerous appointments and tests – which parents Tonia and Enzo had to deal with alongside their son Lucca’s autism spectrum disorder (ASD) needs and Tonia’s own health problems – failed to come up with an answer, leaving the family feeling completely isolated and unsupported.
When Giorgia was four, things suddenly got much worse. “It got very dark,” says Tonia. “She was self-harming, smashing things.” An emergency admission to hospital after a fit finally brought a diagnosis of tuberous sclerosis complex (TSC), a rare genetic condition that can cause a range of health problems including epilepsy, learning difficulties and ASD.
Two years on, Tonia says: “The diagnosis has given me strength, and now we’re part of the TSC community. It can be so isolating but now we feel normal.”
The family found out about Demelza from the parent of another child with TSC. Having been referred, they now all come to the Sittingbourne hospice for respite breaks. Luca, 15, has been on a siblings camp and Demelza arranged play therapy at school for Lilliana, eight. They also take part in sibling activities locally arranged by Demelza Community who provide hospice at home care in East Sussex.
“We try to come for a short break every school holiday. Giorgia will say to me: ‘Mummy, I’m ready for Demelza. I’m ready to play with my friends like me.’
“Demelza gives her a sense of belonging. It’s a relaxing time, and she comes away rejuvenated.”
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