A Queensland family is turning to the public for help as they try to create precious memories for their five-year-old daughter, who is facing a terminal diagnosis of Childhood Dementia.
Charlotte Jameson should be living a carefree childhood, worrying about nothing more than cartoons and playtime. Instead, she is fighting a rare and fatal disease that will gradually steal her sight, her speech, her ability to walk and ultimately her life.
Charlotte was just three years old when her family first realised something was wrong. What began as seizures was initially believed to be epilepsy, a confronting diagnosis that quickly gave way to an even more devastating reality.
“You start googling the types of epilepsy, and you think, ‘oh my gosh, my daughter is never going to be able to drive a car, or swim in a pool’,” her mother Sarah Jameson told 7NEWS.
“You think that’s the worst thing that could happen, she will never live a normal life.”
When Charlotte failed to respond to epilepsy medication, further testing revealed she was actually suffering from Childhood Dementia, a condition most people associate only with the elderly.
“She’ll lose the ability to walk at six or seven,” Sarah explained to 7NEWS.
“She’ll go blind by the time she’s about seven. She’ll stop talking, which is already occurring. By the time they’re ten, they’re usually bed bound.”
Charlotte has been diagnosed with Batten Disease CLN2, an extremely rare and fatal genetic disorder. Doctors have told her family she is unlikely to live beyond the age of 14.
“It was soul crushing. It’s hard to hear your child is going to die,” Sarah said.
“You don’t know these things even exist.”
Professor Susan Maloney from Gold Coast University Hospital described Batten Disease as a cruel neurodegenerative condition.
“There are only a handful of children in Australia with it,” she said.
“You’re missing a gene that codes for some of the protein and carbohydrates in your brain, and there’s degeneration of the brain over time.”
Charlotte currently undergoes fortnightly brain infusions at Gold Coast University Hospital to slow the disease and buy precious time. There is no cure.
“The time will come where we need to measure up quality of life versus sustaining life,” Sarah said.
“My husband and I have sat down and signed a piece of paper for when we know we get to the point when we will no longer be offering the treatment for Charlotte, and we just let the disease take its course.”
Beyond the medical challenges, Sarah says public misunderstanding can be heartbreaking.
“She’s still having two-year-old tantrums, because that’s all she understands,” she said.
Now, the family is focused on making Charlotte’s remaining years as joyful and full as possible. She loves animals, Bluey and Emma Memma, and spending time with her sisters.
To help fund special experiences and bucket list moments while Charlotte is still able to enjoy them, the family has set up a GoFundMe page and is appealing for public assistance.
Sarah hopes sharing Charlotte’s story will also raise awareness about Childhood Dementia.
“There is the same amount of cases of childhood dementia as there is for childhood cancer, but childhood dementia is 100 per cent terminal,” she said.
“These are the cards we’ve been dealt, and we are trying to make the most of the time we have.”
Members of the public who wish to help can donate via the family’s GoFundMe page, with funds going towards creating lasting memories for a little girl whose time is heartbreakingly limited.
