Thousands of Australian children live with dementia. Now recognition and research offer hope to the families raising children who will forget
n many ways, Ronin and Ethan are typical young boys. They love Hot Wheels toy cars, Shaun the Sheep, rude noises and pizza nights. Nine-year-oldis always booting a soccer ball around the back yard. “They’re two absolutely lovable friendly kids, very affectionate and can be very loving when they’re happy and when things are going their way,” their mother, Teresa Lloyd, says.
But childhood dementia takes more young lives each year in Australia than childhood cancer. It affects one in 2,800 children, and around 2,300 young Australians are currently living with childhood dementia. Three-quarters of them will die before their 18th birthday.Teresa Lloyd “The line that I hear every Sanfilippo family say is that they tell you ‘There’s nothing we can do, there’s no cure; just go home and love your boys’,” Lloyd says. This is what Teresa and husband, Steven, were told when Ethan was diagnosed. Their immediate response was utter shock, then distress. “You mean there’s nothing? There’s absolutely no treatment?” she recalls saying. They became determined to fight as hard as they could for their boys.
“I knew a lot of families who had conditions – either Sanfilippo, or other conditions that cause dementia in kids – and I could see we all had the same challenges, we all had the same needs,” Maack says. “I started to think, why are we not grouping them together like we do with other conditions like childhood cancer?”As soon as the Childhood Dementia Initiative grouped these conditions, the devastation of childhood dementia became clear.
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