When most Australians hear the word dementia, they picture an older person gradually losing memories. But for families like Megan Maack’s, dementia is not an illness of old age. It is a cruel thief that steals childhood itself, robbing young children of their ability to walk, talk and even recognise the people they love.
In Australia, around 2,300 children live with childhood dementia. It is not a single disease but a devastating group of more than 145 genetic disorders. Half of these children will not live to see their 10th birthday. Few will reach adulthood.
“Dementia in children looks quite similar to dementia in adults,” explains Megan, CEO and founder of the Childhood Dementia Initiative. “But because it’s happening on a small body and a small brain, where we haven’t necessarily developed and embedded all of the skills that they’re starting to lose, it can look quite different.” Her words come from a recent interview on ABC Radio, where she spoke candidly about her family’s journey.
Megan’s journey as an advocate began at home, with her own children. Isla and Jude were born seemingly healthy and hit all the early milestones of childhood. But when Isla was about two, Megan began to notice delays.
What followed was what families often call a “diagnostic odyssey”, a long and exhausting search for answers. Two years later came the news no parent should ever have to hear: both Isla and Jude had Sanfilippo syndrome, a form of childhood dementia also known as Mucopolysaccharidosis type III (MPS III).
“We went from having what we thought were healthy children to a child with a mild developmental delay to this horrific diagnosis of childhood dementia,” Megan recalls. “We were facing the slowing of development, the plateauing of development, and then ultimately the regression.”
For families, the reality of childhood dementia is heartbreaking. Children gradually lose their ability to communicate, walk, and eat on their own. Seizures, vision and hearing loss, and severe anxiety are all common.
“The time from a mildly developmentally delayed child to death is also accompanied with some pretty dreadful symptoms that are really difficult for families to manage,” Megan explains.
Everyday life becomes an endless juggling act. Families can find themselves dealing with up to 20 medical specialists while providing round-the-clock care. Children are sometimes misdiagnosed with ADHD or autism, adding confusion and delaying the right support. For Megan, this means carers providing one-to-one, sometimes two-to-one support, just to help with basics like dressing and feeding.
The hardest part, Megan says, is the slow and unrelenting grief. “There isn’t language to describe the gradual blocks of grief that we feel,” she says. “Anticipated grief, knowing that they will die one day, is one thing, but every day we’re grieving. I’m grieving the little girl that my daughter once was, you know, she has gone.”
Now 16, Isla no longer speaks and has the cognitive abilities of a six-month-old. Yet, in a tender moment of hope, Megan shares: “I’m not sure she knows who I am, but I feel like she always knows I’m special. When she sees me, we still connect. I do look into her eyes and I do know that we have a connection that’s special, and I feel like there’s a certain essence that has been retained.”
Despite the enormity of her loss, Megan treasures the small moments of joy. “We laugh a lot, we sing a lot,” she says, surrounded by a dedicated team of carers who lift her family’s spirits.
Those sparks of resilience fuel her drive to push for change. After founding the Sanfilippo Children’s Foundation, which raised $8 million for research and supported 45 projects, Megan realised the need for a bigger vision.
“I was really struck by the fact we were having this kind of success, but it’s really inefficient. This is a rare disease and there are all these other diseases that present similarly, there’s got to be a better way,” she reflects.
That realisation led her to create the Childhood Dementia Initiative. Its central push is for a National Childhood Dementia Unit to tackle what she calls “one of Australia’s most overlooked health crises.”
One in every 2,900 babies born here will develop childhood dementia, yet funding and awareness trail far behind conditions like childhood cancer. While more than 80 per cent of children with cancer are now cured, there has been no progress in survival or quality of life for children with dementia. Yet the number of young lives lost each year is the same.
Megan is clear about what needs to change: “One of the things we are wanting to do is shift the perception that this is an old person’s disease. It is a lifespan disease. And it affects everybody. It affects children as much as adults.”
The proposed National Unit would provide a model of care, a reference centre, a therapy hub and a patient data system. Economic modelling shows a $12.64 million investment over five years could return almost five times that in benefits. Megan stresses this is not a plea for money but “an investment opportunity” to transform lives.
For many families, getting a timely diagnosis is life-changing, yet still far too rare. Megan knows this all too well. “In my case, it was probably 18 months to two years of me going from doctor to doctor to doctor saying ‘I’m worried, I’m worried, I’m worried, I’m increasingly worried’,” she recalls.
By the time Isla was diagnosed, Jude was already two, and genetic testing revealed he too had Sanfilippo syndrome. Without earlier answers, families may unknowingly have more children with the same condition.
And even after diagnosis, the support is patchy. “There aren’t specialist psychological supports, most of the families we deal with have never been referred to psychological counselling to help them manage the journey that they’re on,” Megan says.
Despite the heartache, Megan continues to find meaning in her work. “I feel great privilege that I get to do the work that I do, that because my kids have had this unexpected life, it’s put me on a path that is really extraordinary, an extraordinary opportunity to be able to do something so purposeful,” she says.
Her advocacy is already making ripples. The National Dementia Action Plan recently recognised children as a priority population for the first time. Experts like Professor John Christodoulou have also called for a “one-stop shop” for families to provide coordinated care and management, even while a cure remains out of reach.
This Dementia Action Week, Megan’s voice carries a simple, poigniant message. “The only thing worse is if nothing changes,” she says. “If we go through this and then in 10, 20 years another family goes through it and they have the same experience, I have to put my grief into something.”
For Megan, Isla, Jude and thousands of other families, that “something” is hope.
Hope that with greater awareness, research and compassionate care, no family will have to suffer alone.
To learn more or support the cause, visit the Childhood Dementia Initiative at www.childhooddementia.org
