Sport your shorts
Three-year-old Ralph looks like any other toddler. He’s happy, fearless and he loves to play. But behind his confident character lies a very rare and aggressive invisible condition, which is slowly reducing his abilities.
Dravet Syndrome is a degenerative gene mutation, which means Ralph’s brain capacity will continue to deteriorate as he gets older and he will gradually lose the ability to walk.
Ralph cannot speak. Since his diagnosis at the end of 2018, Ralph’s mum Hayley has struggled with how his future may develop. ‘I felt relieved that we had a name for it at last,’ she said. ‘But when I got home and actually looked it up, I felt like we’d been given a death sentence.’
Ralph also suffers from severe epileptic seizures, which adds a high risk of sudden unexplained death in epilepsy while he sleeps. ‘There’s nothing we can do about that,’ added Hayley. ‘I try to get him doing as much as he can for as long as he can, because I don’t know how long he’ll be able to just be a child having fun.
‘I don’t know how long we’ll have him for. I keep getting really emotional thinking about putting money aside for funeral plans and things like that.’
Medway community champion, Tim Hyde, said: ‘Ralph and his family are one of many great reasons to ‘sport your shorts’ on Thursday 2 July and raise much-needed funds and awareness for Demelza House Children’s Hospice, which provides tailored care to children with serious or terminal conditions, and their families.
‘So, dig out your most colourful and wacky pair of shorts – the funkier the better – and join us for #Shorts4ShortLives Day. Please visit www.sponsorme.co.uk/timhyde/shorts-for-short-lives.aspx to donate. You’ll be helping the hospice to continue providing specialist care and support to hundreds of families like Ralph’s. One of the greatest things Demelza can give to children like Ralph is the chance to live a full life, no matter how short.’
‘Demelza gives us a space for Ralph to come and be safe and happy,’ said Hayley. ‘We can leave the house and feel like a normal family, and the boys can be normal children. It’s changed life for us really – Demelza gives Ralph a chance to be a little boy and enjoy life.’
