Childhood dementia: a reality thousands of Australian families face but few know. sbs news IG News

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As a child and a very young child, Jessie Mei Mei could do most of the things that people her age could do. But at some stage, his development stopped and then started coming back. By the time she was six years old, she could not feed herself.
Childhood dementia is a disease that kills almost as many Australian children as cancer, yet advocates say little is known about it.
Ms. Mei Mei, who lives in Sydney, has Sanfilippo syndrome, one of 70 rare genetic disorders that cause childhood dementia.
Childhood dementia attacks the brain and central nervous system, causing the entire body to deteriorate over time.
Ms. Mei Mei’s mother, Cindy Lorenz, says that throughout her life, her motor skills decline.

“She started being able to do most things and then by the time she was six years old, she couldn’t feed herself,” she said.

A person looks through a microscope.

Government funding for childhood dementia research is 20 times slower than for childhood cancer. Source: AAP , Jeff Miller

“Then by the time she was eight, her voice was gone. She had no words, nothing, but then – for a while – it came back. We found that skills come and go.”

Thousands of Australian children are living with dementia

A report to be released next week by the Child Dementia Initiative shows that there is little understanding of the debilitating nature of childhood dementia and its devastating impact on families.

“You’re just watching your baby slip. I think as long as she’s here, we mourn every day. Because we know she’s leaving, and we try to keep her as strong as possible, So that he stays here longer, ”said Ms. Lorenz.

In Australia, there are an estimated 2,300 children living with dementia, similar to children with motor neuron disease.
Globally, the condition affects approximately 700,000 children.
The report said that while the number of childhood deaths from dementia and cancer is around 90 each year, government funding for childhood dementia research is 20 times less than for childhood cancer.
Megan Donnell, chief executive of the Childhood Dementia Initiative, said the needs of children with dementia and their families are not being met.

“We are calling for increased funding in research, to improve the care and support services that are available to families – because we know the services that are in place are not meeting their needs now. What they need is enough.”

‘Our children are dying everyday’: plea to give priority to recognition

Ms Donnell said her organization was also calling for recognition of childhood dementia as a health priority.
“The reason that early diagnosis is really important, it allows drug development and therapeutic development to be tested on really young children, which is absolutely critical to us, if we ever want to find a treatment and cure for these conditions.” Let’s move towards achieving,” he 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.
Ms. Lorenz wants to make sure that her daughter, now 20, has a fulfilling life.
He said that while the National Disability Insurance Scheme is providing some assistance through instruments, the delay was disappointing.
“Our kids are like your kids — except they’re dying every day, I don’t think anyone realizes they’re here for a very short time,” she said.
as part of Which runs until 25 September, a face painting campaign called ‘Face It’ is being organized to raise awareness of the condition and raise funds for research.

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