When Olivia Thurston was born on January 15, 2008, weighing in at 8 pounds and 6 ounces, she was a happy and healthy baby and continued to develop normally in her first years.

But at the age of 3, her progress changed. Her speech was limited and she became increasingly clumsy; she suffered from seizures daily. She continued to regress until, by the age of six, Olivia lost her ability to walk and talk altogether.

After endless testing, doctors finally diagnosed Olivia this June with Late Infantile Battens disease, an incredibly rare and fatal brain disorder that causes children to progressively lose cognitive function and motor skills, suffer from severe epilepsy and can also affect vision.

Olivia is currently the only child in Australia and one of only 10 or 11 in the world with her particular variant of the disease,CLN6. Her family is now working tirelessly to raise funds for her care and awareness of the disorder.

Already severely crippled by the disease, the 8-year-old girl continues to regress, her mother says.

“Every day is another loss. She is slowly going downhill. Three months ago she could sit up on the floor by herself, now she can’t do that,” her mother, Alison Thurston, explains.

Beyond the physical impairments, Olivia suffers from dementia and often experiences frightening hallucinations.

“We try not to dwell on how she used to be, but it is tough because we’ve kind of lost our girl. So we’re grieving every day, really,” her mother says.

In the years before the onset of this disease, Olivia loved anything involving the outdoors. Her favorite activities included riding her bike and playing soccer. “It’s been very hard for her and us that she can’t do any of that anymore,” her mother says.

Though she can no longer play like she used to, Olivia’s mother marvels at one thing she hasn’t lost – her smile.

“She’s such a lovely girl. She can still smile, which is the most amazing,” Alison says. “And she still has such a sense of humor.”

Thurston recalls a moment just a few days ago when she tripped over some toys that had been left on the floor and Olivia immediately burst out in laughter.

“She can’t talk anymore, but some things she still finds quite amusing,” Alison says with a laugh.

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