Help us in the fight against Childhood Dementia
Childhood and dementia are two words we would not expect to sit side by side. Sadly though, childhood dementia is a real, devastating and currently incurable disease. South Australian mum Renee Staska, like many of us, had never heard of the disorder until she recently discovered that all three of her children are living with it.
For parents, the diagnosis usually comes as a total shock. They may have noticed some minor developmental delays, but do not expect to hear that their child is terminally ill, or that there is no cure for the illness. To make matters worse for these families, childhood dementia is currently drastically underfunded and overlooked, meaning that there has been little government funding for research to find treatments and cures. It also means that there is little care and support offered to those affected.
The Childhood Dementia Initiative (CDI) states that recent analysis of federal government research funding in Australia has revealed significant inequity between child illnesses. According to the analysis, we lose nearly as many children to childhood dementia as we do to cancer. And yet, the disease is reported to receive 20 times less funding than childhood cancer.
Without a cure, and still little acknowledgement of the disease, parents like Renee are forced to grapple with the reality that their children will gradually deteriorate as a result of progressive brain damage. Children with the disease gradually lose skills such as the ability to write, read, talk, walk and play. Their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive. Unfairly, with the state of current research funding and support, these children may not live beyond 18.
With the support from people like you, we are hoping to make a difference in the life of Renee and her three beautiful children, as well as other families affected by the disease. To do so, we are currently hosting a GoFundraise campaign, where you can make a donation with just a few simple clicks. We encourage you to please donate to this campaign and we urge you to do so today. This is an incredibly worthy cause, surrounding a health issue that has been overlooked for far too long.
Any donation, whether big or small, is hugely appreciated and will directly impact Renee’s family and others affected by childhood dementia.
Little Heroes Foundation is a South Australian-based not for profit organisation that supports the physical and mental health of children.
Little Heroes Foundation have been supporting seriously ill children for 26 years. They have contributed close to $40 million towards new equipment and facilities, mainly at Adelaide's Women's and Children's Hospital (WCH), which has funded major pieces of equipment and refurbishments.
Recently, Little Heroes Foundation have partnered with Breakthrough Mental Health Research Foundation, and together with support from Flinders University's Professor Philip Slee and Dr. Grace Skrzypiec, they have developed the Big Talks for Little People campaign - an online mental health module for primary school age students (7-12 years) within South Australia and the Northern Territory. The program focuses on prevention through early and meaningful education, covering topics on conflict resolution, resilience, relationship building, problem-solving, optimism and mental health literacy. The Foundation has also seen the installation of Friendship Benches in many schools, providing children with a physical space where they can have conversations with each other about mental health.
Little Heroes Foundation is a not-for-ptofit and relies heavily on the support of the community and their Corporate Sponsors. It is everyday people like you that help us make a difference in the lives of children and families who need it most.
Originally published in Connected Caregiving Summer 2023