As a baby and very young child, Jessie Mei Mei was able to do most of the things that others her age could. But at some point, her development stopped and then began to deteriorate. By the time she was six, she could no longer feed herself.
Childhood dementia is a disease that kills nearly as many Australian children as cancer, but proponents 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 cause dementia in children.
Dementia in children affects the brain and central nervous system and deteriorates the whole body over time.
Cindy Lorenz, Ms. Mei Mei’s mother, says her motor skills have deteriorated throughout her life.
“She started doing most things and when she was six she couldn’t feed herself anymore,” she said.
Government funding for childhood dementia research is 20 times slower than for childhood cancer. Source: MONKEY / Jeff Miller
“When she was eight, her voice was gone. She had no words, nothing, but then – for a while – it came back. We have experienced that skills come and go.”
Thousands of Australian children are living with dementia
A report released next week by the Child Dementia Initiative shows that there is very little understanding of the debilitating nature of childhood dementia and the devastating effect it has on families.
“You just see your child slip away. I think we mourn every day while she is still there. Because we know she’s going, and we’re trying to keep her as strong as possible so she’ll be here longer,” said Mrs Lorenz.
There are an estimated 2300 children living with dementia in Australia, which is a similar number to those with motor neuron disease.
The condition affects approximately 700,000 children worldwide.
Although the number of deaths among children from dementia and cancer is about the same every year, government funding for research into childhood dementia is 20 times lower than for cancer in children, the report says.
Megan Donnell, chief executive of the Childhood Dementia Initiative, said the needs of children with dementia and their families were not being met.
“We are advocating for more funding for research, for improvements in the care and support services available to families – because we know the services that are there now are not meeting their needs. And the support they need is huge.”
‘Our children die daily’: plea for priority recognition
Ms Donnell said her organization also called for childhood dementia to be recognized as a health priority.
“The reason that early diagnosis is really important allows for real testing of drug development and therapeutic development in young children, which is absolutely critical for us, if we are ever going to get treatments and cures for these conditions,” she said.
About 75 percent of people with childhood dementia have a life expectancy of less than 18 years and there is no cure for their condition.
Mrs. Lorenz wants to ensure that her daughter, who is now 20 years old, has a fulfilling life.
She said that while the National Disability Insurance Scheme offers some support through equipment, delays have been frustrating.
“Our children are like your children – except they die every day, I don’t think anyone realizes that, they’re only here for a very short time,” she said.
As part of Running until September 25, a face painting campaign called “Face it” is being held to raise awareness of the condition and raise money for research.