Angelina Lati, the brave and bright young woman who touched so many hearts with her unwavering spirit, left this world last week, on May 29, after nearly seven years battling Lafora disease—a cruel and ultra-rare form of childhood dementia. She was only 21.
Her mother, Niki Markou, a tireless advocate for research into Lafora disease, shared the heartbreaking news on social media:
“Her beautiful smile. Her beautiful soul. You will be missed my love.
With deep sadness, I regret to inform you that Angelina left this world today. Tuesday May 29, 2025 at 10am.
Taken by the cruel Lafora disease which she suffered for 6 years and 8 months…. Our hearts are broken.”
Angelina, the Greek Cypriot young woman from Sydney was one of nearly 2,300 people in Australia suffering from childhood dementia, and the only person in the country diagnosed with Lafora disease, an ultra-rare, terminal neurodegenerative disorder, with only about 80 registered cases worldwide.
She was just 14 when she experienced her first seizure. Full of dreams — to sing, act, or work in the beauty industry — Angelina’s world came crashing down as her health began to decline.
In a past interview with Neos Kosmos, her mother recalled the painful reality of coming to terms with her daughter’s condition, and accepting that her young vibrant daughter was slowing down due to the cognitive decline of dementia.
“It’s very hard to watch your child suffer. And knowing that it won’t stop,” Niki Markou had said during Dementia Action Week 2023. That year, the Childhood Dementia Initiative launched the “FACE it” campaign, encouraging children and families to raise awareness about this life-limiting condition.
Despite the odds, Ange’s deteriorating health, the heartache, her mother never stopped fighting for her daughter, with efforts to raise awareness, advocate for more research, clinical trials, treatment and a possible cure.
Even as her health declined, Angelina participated in these campaigns whenever she could, hoping to make a difference, if not for her, then for other children facing unimaginable suffering.
Through her journey, she was surrounded by love and was given experiences that helped fulfill her longing for a normal life.
The Jenny Souris Foundation, which supported the family shared a tribute on social media, in memory of Angelina Lati.
“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. 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. It has been our privilege to stand beside them, and to witness the impact of community, kindness, and generosity in the most difficult times. Ange’s story will always be a part of the foundation’s purpose. 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 funeral was held on Wednesday, 4 June.
In lieu of flowers, her family is asking for donations to help fund treatment for children living with Lafora disease. They hope no other family will have to endure what they have.
“Ange’s wish was to cure Lafora disease and we finally have the opportunity to do that because of chelseashope.org.”
