"Call for more research into childhood dementia, a disease that kills almost as many kids as cancer" - By Gladys Serugga and Rebecca Opie (ABC News) Read the full article here.
Local SA mum, Renee Staska, shared her heart-breaking story with ABC News last Friday. In the interview, she sheds some light on her experience of her three children when they were diagnosed with Niemann-Pick disease, type C.
"You're not just a mum of three kids anymore — you're a mum of three terminally ill children now," Ms Staska said.
Every rare diagnosis journey is unique, and we are so proud of Renee for her courage and strength is sharing what is surely one of the most trying times in any parent's life.
As mentioned by Professor Christodoulou in the article, we need "improved support for families caring for children with what is really a devastating disorder."
To help families like Renee around Australia, as well as fund vital research for a cure, support the Australian NPC Disease Foundation in its goals of "Research. Cure. Persevere."
Ways to support NP-C in Australia: