Charlotte Jameson was a typical three-year-old girl with a surprisingly simple life.

Sweet, curious, happy and healthy.

Then one day she started having seizures.

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Doctors thought it was epilepsy.

“When you start Googling different types of epilepsy, you think, ‘Oh my god, my daughter will never be able to drive a car or swim in a pool,'” mother Sarah Jameson explains.

“You would think that would be the worst thing that could happen. She would never have a normal life.” Heartbreakingly, the prognosis was even worse.

When Charlotte didn’t respond to epilepsy medication, a series of tests revealed that the cheerful three-year-old actually had childhood dementia.

When we hear the word dementia, we rarely think of young children.

That’s unfair at any age, but what about for a 3 year old?

“She won’t be able to walk until she’s six or seven years old,” Sarah explains.

“By the age of seven, they’ll go blind. They won’t talk anymore. It’s already happening. By the time they’re 10, they’re usually bedridden.” Charlotte is just five years old. Doctors told her family that she was unlikely to live past the age of 14. “It was a soul-crushing experience. It’s hard to hear of a child dying. You don’t even know these things exist.”

Childhood dementia comes in many forms.

In Charlotte’s case, it was Batten disease CLN2, a fatal genetic disease that develops between the ages of two and four and causes devastating debilitation, with no chance of survival. “This is a very rare neurodegenerative disease of early childhood,” says Professor Susan Maloney, Director of Pediatrics at Gold Coast University Hospital.

“Only a handful of children in Australia are affected by this disease. When this disease occurs, the genes that code for some of the proteins and carbohydrates in the brain are lost. Brain material does not form properly and the brain degenerates over time.”

Charlotte is keeping up a full schedule of treatments, including fortnightly brain drips at Gold Coast University Hospital, to slow the progression of the disease and buy her precious time.

But for those suffering from this cruel disease, there is no cure.

“There will come a time when we need to assess life support and quality of life,” Sarah says.

“My husband and I sat down and signed a piece of paper. We’re just waiting out the course of the disease in case we get to the point where we can no longer provide Charlotte with care.”

Charlotte’s family would like to share her story to help us all understand more about childhood dementia.

“It’s hard when she breaks down in public. People say, ‘What’s wrong?’ We can’t explain that her mental and cognitive abilities are at the level of an 18-month-old. She’s still throwing the tantrums of a two-year-old, because that’s all she understands,” Sarah explains.

“The number one thing I want people to know about Batten disease and childhood dementia is that there are many more cases than you realize. Every time I say my daughter has dementia and I point to her at five years old, they say they thought it only affected older people. That’s not the case. There are so many different forms of dementia.”

Sarah Jameson says she didn’t even know about childhood dementia until Charlotte was diagnosed.

“There are as many cases of childhood dementia as there are cases of childhood cancer, and 100 percent of childhood dementia is terminal.”

Charlotte is a sweet little girl who loves animals, Bluey, Emma Mema, and all the normal 5-year-old things.

The family focuses on giving her the life she deserves and filling her days with happiness and time with her family, older sister, and twin sister.

They were reluctant to ask for help, but 7NEWS expects many will.

A GoFundMe page has been set up for Charlotte to collect donations to tick things off her bucket list.

“And I want people to know more about childhood dementia,” says Sarah.

“These are the cards we’ve been dealt and we’re trying to make the most of the limited time we have.”

If you would like to contribute to Charlotte, please gofundme page, click here.

To learn more about Batten disease and the battle Charlotte faces, please visit: here For more information.