Angelina Lati, the Sydney teenager whose brave journey with childhood dementia captured hearts across Australia, has sadly passed away at the age of 21.
Angelina passed away on Thursday, May 29 at 10am, after living with Lafora disease — a rare and cruel form of childhood dementia — for nearly seven years.
“Her beautiful smile. Her beautiful soul. You will be missed my love,” her family wrote in a heartfelt statement on social media. “Our hearts are broken.”
Angelina’s mother, Niki Markou, had long shared her daughter’s story in a bid to raise awareness of childhood dementia and to campaign for access to clinical trials that could slow its relentless progression.
In an interview with The Greek Herald in 2021, Ms Markou recalled the first signs something was wrong when Angelina was 14 — from dropping glasses to suffering a seizure at home. She was initially misdiagnosed, but eventually received the devastating diagnosis of Lafora disease, a condition that progressively robs children of their speech, mobility and memory.
“It’s like she’s fading away,” Ms Markou said at the time. “She’s not going to get married, she’s not going to have kids, she’s not going to grow old… You start thinking of all those future things that are going to be taken away from you.”
Despite the challenges, the family continued to fight for treatment options.
Today, tributes have flowed for Angelina, including from the Jenny Souris Foundation, which supported the family through fundraising and advocacy.
“It is with deep sadness that we share the passing of beautiful Ange — a bright, brave, and inspiring young soul who touched the hearts of everyone at the Jenny Souris Foundation,” the organisation wrote in a statement.
“Ange’s strength and spirit, along with the unwavering love of her mum, Niki, reminded us all of what it truly means to fight with courage and to live with grace… Her legacy will continue to guide us as we help other families facing the unimaginable. Rest peacefully, Ange. You will never be forgotten.”
Angelina’s story brought national attention to childhood dementia, a group of over 70 genetic conditions affecting thousands of young Australians. With no known cure for most forms, families often face long and isolating journeys — something Angelina’s legacy may one day help change.
