Angelina or 'Ange' Lati is 19, and in many ways a typical teenager. She likes to colour her hair and dance to music videos. Yet she is also among thousands of people in Australia living with childhood dementia.
Ange suffered her first seizure five years ago, at the age of 14. However, her mother Niki Markou says the diagnosis came out of the blue.
"It was a big shock. I thought I was going to have a heart attack, to be honest," says Markou, 44.
"At first, I was in denial and angry, saying: 'Oh, they've got this wrong. An early life-limiting disease, how does that happen to a perfectly healthy child?'"
Ange is among 2,300 people in Australia living with one of the more than 70 rare genetic disorders that cause childhood dementia.
Ange Lati at a hospice in Manly. Source: SBS News / Sandra Fulloon
It occurs when the body does not properly process glycogen, a source of stored energy. This then builds up in the body and forms clumps called ‘Lafora bodies’ that interfere with proper brain function.
The disease is terminal, and symptoms include seizures, cognitive decline and dementia.
Markou says it is painful to watch her once vibrant teenage daughter live with the impact of dementia.
"She used to be a big personality, alive and happy. Now she is sad and miserable and very frustrated. And it breaks my heart."
As Ange's dementia progresses, Markou says it is robbing her daughter of an active life, with friends her age.
"She's a young adult and seeing her friends go out driving, and that's a big trigger for her. She gets very angry and frustrated because of it. She does not like her diagnosis. She has not accepted it."
This week, Ange is staying on Sydney's northern beaches, at the new Manly Adolescent and Young Adult Hospice - Australia's first dedicated service for young people with life-limiting illness.
"A dementia patient can't be left alone. They are unsafe, and at high risk of falls. So, it is one-on-one care all the time," Markou says.
Ange's mum Niki Markou in Sydney. Source: SBS News / Sandra Fulloon
According to Childhood Dementia Initiative CEO Megan Maack, a new report has revealed the significant barriers children living with dementia encounter when accessing care and support in Australia.
"The report found that the burden of care was consistently extreme on families, that inadequate supports and care were available for them. And families experienced a high level of family breakdown as a result."
Maack is herself the mother of children living with dementia. For the past three years, she has actively pushed for more global research and better support for families.
"Both of my children were diagnosed 10 years ago when they were aged two and four with a form of childhood dementia. Pretty much all of the challenges that were described in the report, I have personally experienced.
Megan Maack (centre) and her children Jude, now 12 (left) and Isla, now 14 (right). Source: Supplied / Megan Maack
"This year, we are calling on the Australian government to appropriately include children in the upcoming National Dementia Action Plan," Maack says.
"We need to be considered with priority given the historic lack of services and investment that's been made into the childhood dementias."
Childhood Dementia Day is marked this week with a face-painting campaign, highlighting an illness that takes a child's life every 11 minutes globally.
"Previously, childhood dementia conditions were researched individually and considered as individual conditions rather than the common presentation of dementia," says Dr Kris Eldridge, head of research at the Childhood Dementia Initiative.
"We've been working to bring together researchers so that we can get greater collaboration, greater awareness, and more funding for research and greater economies of scale so that we can get more treatments to children much more quickly."
Around 75 per cent of those with childhood dementia have a life expectancy of less than 18 years, and there is no cure. Ange is also at high risk of Sudden Unexpected Death in Epilepsy (SUDEP).
Niki Markou with Ange as a baby. Source: Supplied / Niki Markou
While there's no cure, Markou says Ange gets bi-weekly enzyme replacement therapy infusions of an experimental medication. This was approved for compassionate use in Australia, for which her mother Niki is grateful.
"She is among the first in the world to start an enzyme replacement therapy and it is showing some promising signs. And I believe she's had a lot slower progression to what would normally have happened 10 or 20 years ago."
It may take up to two years to assess the full impact of the medication. Meanwhile, the family can only wait and hope.
"We are just making the most of every day," Markou says.
Participants at a dementia cafe in Melbourne. Source: SBS News / Jeff Kehl
"Dementia is the biggest health issue facing people aged 65 and over in Australia today," says Liz Behjat, spokesperson for the Aged and Community Care Providers Association.
"Australia has an ageing population, we are all living much longer. So, what's happening now is the acuity of illnesses that we're taking into old age with us becoming more apparent."
Memory or dementia cafes are another outlet for carers, according to Kirsty Porter, who runs five Umbrella Dementia Cafes in Victoria.
Kirsty Porter, Umbrella Dementia Cafes CEO. Source: SBS News / Jeff Kehl
"Socialising in a big group also reduces feelings of awkwardness and reduces shame, fear, and guilt that's associated with a cognitive impairment."
Melbourne couple Grace and Bob Dimattina are among Umbrella Dementia Cafes' 285 members.
"Bob is still the same kind, gentle, sweet man that I married," says Grace at a cafe gathering in Melbourne's Box Hill.
"But I get sad when I think of what he was able to do and what he can't do now. And sometimes I even get a bit angry with the situation. I feel as if I'm losing him a little bit at a time."
Grace says since Bob was diagnosed with dementia 10 years ago, his memory has declined steadily.
"Bob doesn't remember much from one minute to the next and he's always losing his car keys. Also, I try not to tell him anything until just before it happens, otherwise he gets everything mixed up."
Longer-term memories remain vivid, however. For 11 years, Bob worked at a family produce stall at Melbourne's Queen Victoria Market.
"It was just hard work, that's all. We started work at midnight and finished in the late afternoon," he recalls.
Grace and Bob have been part of the Umbrella Dementia Cafes family since 2019, and say regular meetings provide a safe space for Bob to socialise.
"It helps him, helps him a lot. It is very relaxing for both of us and we never feel judged," Grace says.
"It is like a family for us where we can be ourselves, and I don't have to worry if Bob cracks a joke that nobody gets.
"So we're very happy here. It makes a big difference."
Dementia Action Week runs until 24 September, helping to raise awareness and funding for research.
