For South Australian mum-of-three, Renee Staska, her time with her children is bittersweet. She tries to make the best of each day and create beautiful memories, but she knows their time as a happy family is going to be cut short. Because all three of her children have been diagnosed with childhood dementia.
Appearing on Australian show A Current Affair the diagnosis started with her youngest son who at eight months old was found to have an enlarged liver and spleen.
“They found Niemann-Pick disease type C1, which is a type of childhood dementia. I got given it on a piece of paper and told this is what it is, it was terminal, there was no cure or treatment,” Renee said.
The condition develops when a genetic mutation is present in both parents’ DNA. The finding in her youngest child pointed to a 25 per cent chance Renee’s older two children could also have it.
Devastatingly, blood tests came back positive for Hudson, 8, and Holly 6, and left Staska to proceed through parenthood in a very different way as she began a journey with palliative care for her children who will develop to a certain age and then begin to regress, losing memory and function.