Childhood Dementia Initiative (CDI), a distinct organisation formed in the Northern Beaches, is ramping up support for funding and raising awareness about an illness affecting more than 700,000 children across the world.
The organisation’s CEO, Megan Donnell from Freshwater, and Head of Care, Gail Hilton from Avalon, have been working at Childhood Dementia Initiative with a primary goal of having Greg Hunt, the Commonwealth Minister of Health, acknowledge that this is a concerning health issue in Australia.
Ms Hilton said that they approached health professionals, researchers, and families with children who have symptoms of childhood dementia in CDI’s first year to gather data that could drive change and fill in the gaps. As there is no specialised treatment for dementia for children anywhere in New South Wales, families turn to the NDIS or palliative care services.
Ms Donnell and Ms Hilton believe that there should be programs, medical studies, innovation, collaboration, and awareness focussed on treatments for the children, in the same way that childhood cancer received much attention 30 years ago.
“Focusing on dementia, the commonality, rather than the underlying genetic cause will drive progress in therapeutic development and care for the 70+ genetic disorders as a collective,” the group stated.
“Seventy-five per cent of children with dementia have a life expectancy of 18 or less, with fewer than 5 per cent of childhood dementia disorders having any therapies. Care for these children and their families is often inadequate and inequitable.”
In early November, Mr Hunt confirmed that $239 million will be provided for 248 research projects, including childhood dementia.
On the other hand, Dementia Support Australia (DSA) has also been extending its support to families with kids living with dementia by offering practical support strategies and behavioural support programs specific to each child.
“The support provided by Dementia Support Australia was the most practical, useful and effective service that I’ve accessed since Isla and Jude’s diagnoses,” Ms Hilton said, referring to her kids with dementia due to Sanfilippo Syndrome.
Get involved with the Childhood Dementia Initiative by becoming a donor. Follow their Facebook page for updates.