Childhood dementia: a reality faced by thousands of Australian families but few are aware of it SBS News

As a baby and very young Jessie Mei Mei could do most things that others her age could do. But at some point their development stopped and then began to reverse. At the age of six she could no longer support herself.
Childhood dementia is a disease that kills nearly as many Australian children as cancer, but 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 cause childhood dementia.
Childhood dementia attacks the brain and central nervous system, and over time deteriorates the entire body.
Ms. Mei Mei’s mother, Cindy Lorenz, says her motor skills have deteriorated throughout her life.

“Initially, she was able to do most things, and by the time she was six, she couldn’t support herself,” she said.

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

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

Thousands of Australian children are living with dementia

A report due to be released next week by the Child Dementia Initiative shows that there is very little understanding of the debilitating nature of dementia in children and the devastating impact it has on families.

“You’re just watching your kid escape. I think we mourn every day as long as she’s still here. Because we know she’s leaving and we’re trying to keep her as strong as possible so she stays here longer,” Ms. Lorenz said.

There are an estimated 2,300 children living with dementia in Australia, a similar number to those with motor neuron disease.
The disease affects around 700,000 children worldwide.
While the number of childhood deaths from dementia and cancer is about the same each year, about 90, government funding for research into childhood dementia is 20 times less than that for childhood cancer, the report said.
Megan Donnell, executive director of the Childhood Dementia Initiative, said the needs of children with dementia and their families are not being met.

“We are calling for more funding for research into improving the care and support services available to families – because we know the services that are now available do not meet their needs. And the support they need is pretty immense.”

“Our children die every day”: Plea for recognition

Ms Donnell said her organization is also calling for the recognition of childhood dementia as a health priority.
“The reason early diagnosis is really important is that it allows drug development and therapeutic development to really be tested on young children, which is absolutely critical for us if we’re ever going to have 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.
Ms. Lorenz would like to enable her 20-year-old daughter to have a fulfilling life.
She said while the National Disability Insurance Scheme is providing some equipment assistance, delays are frustrating.
“Our kids are like your kids — 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 through September 25, a face-up campaign called “Face it” will be held to raise awareness of the condition and raise funds for research.

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