As a baby and a very young child, Jessie Mei Mei could do most things others her age could do. But at some stage, her development stopped and then started to regress. By the time she was six, she could no longer feed herself.
Childhood dementia is a disease that kills almost as many Australian children as cancer, yet advocates say far fewer people are aware of it.
Ms Mei Mei, who lives in Sydney, has Sanfilippo syndrome, one of 70 rare genetic disorders that causes childhood dementia.
Childhood dementia attacks the brain and central nervous system, deteriorating the entire body over time.
Ms Mei Mei’s mother Cindy Lorenz says throughout her life, her motor skills have deteriorated.
“She started off being able to do most things and then by the time she was six, she could no longer feed herself,” she said.
Government funding for childhood dementia research is 20 time slower than it is for childhood cancer. Source: AAP / Jeff Miller
“Then by the time she was eight, her voice had gone. She had no words, nothing, but then – for a little while – then it came back. We found skills come and go.”
Thousands of Australian children live with dementia
A report set to be released next week by the Child Dementia Initiative shows there is very little understanding of the debilitating nature of childhood dementia, and the devastating effect it has on families.
“You’re just watching your child slip away. I think that we grieve every day while she is still here. Because we know she’s going, and we try to keep her as strong as possible, so that she will be here longer,” Ms Lorenz said.
In Australia, it’s estimated 2300 children are living with dementia, which is a similar number to those with Motor Neurone Disease.
Globally, the condition affects about 700,000 children.
While the number of childhood deaths from dementia and cancer each year is about the same, around 90, government funding for childhood dementia research is 20 times lower than it is for childhood cancer, the report says.
Megan Donnell, chief executive of the Childhood Dementia Initiative, said the needs of children with dementia and their families weren’t being met.
“We’re calling for increased funding into research, into improvements into the care and support services that are available to families – because we know the services that are there now are not meeting their needs. And the support that they require is quite immense.”
‘Our children are dying daily’: Plea to prioritise recognition
Ms Donnell said her organisation was also calling for childhood dementia to be recognised as a health priority.
“The reason that diagnosis early is really important, it allows drug development and therapeutic development to be really tested on young children, which is absolutely critical for us, if we’re ever to move towards getting treatments and cures for these conditions,” she said.
About 75 per cent of those with childhood dementia have a life expectancy of less than 18 years and there is no cure for their condition.
Ms Lorenz wants to ensure her daughter, who is now 20 years old, has a fulfilling life.
She said while the National Disability Insurance Scheme is providing some support through equipment, delays were frustrating.
“Our kids are like your kids – except they’re dying every day, I don’t think anybody realises that, that they are here for a very short time,” she said.
As part of , which runs until September 25, a face painting campaign called ‘Face it’ is being held to raise awareness of the condition and raise funds for research.