'I watched my child die in slow motion': Why we urgently need to talk about childhood dementia

Photo: Anna and her little boy, Sebby
Photo: Anna and her little boy, Sebby Photo: Supplied

Anna Pak Poy remembers the moment her son, Sebby, had his first full-body seizure.

That was the 'tipping point' for the little boy who had just celebrated his first birthday.

He was diagnosed with Tay-Sachs Syndrome, a rare disease and form of childhood dementia, at six-months-old and Anna was was told there was no cure or hope.

Photo: Sebby was just 22-months old when he died as a result of Childhood Dementia
Photo: Sebby was just 22-months old when he died as a result of Childhood Dementia Photo: Supplied

The Adelaide mum watched her child slowly deteriorate; to stop being able to sit up and feed himself, to regress mentally, to have seizures that overtook his little body, to have a peg put in his stomach when he was no longer able to swallow - before he very rapidly declined and was cruelly snatched from her loving arms when he was just 22-months-old.

She describes childhood dementia as 'watching your child die in slow motion'. 

"It's heartbreaking," she tells Essential Baby. "There is no way to soften the blow about the impact of this shocking disease. It really is the worst thing to happen to any parent."

"I remember the naive bliss I felt before we got this diagnosis, when I thought the worst thing would be to lose a limb or lose my parents. Then our world came crashing down."

As a company owner who is focused on solving problems, Anna immediately went into overdrive looking for a solution to save her son. 

"I quickly realised there wasn't one," she says through tears. "I felt so helpless. His life expectancy was so short, I realised all I could do was just be his mother. And to try and fill that small period of time with a lifetime of memories and exerpiences."

"Sometimes I look back and wonder how I got through it, but as a parent, you just have to keep going."

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Megan Donnell knows only too well. 

She is currently losing both her beautiful kids, 11-year-old Isla and nine-year-old Jude, to childhood dementia and tells Essential Baby it is 'every parents worst nightmare'. 

"I have watched my daughter lose the ability to talk and communicate," she explains. "She is incontinent. She is disoriented, agitated and can no longer recognise me. She is like a one-year-old trapped in an 11-year-old's body."

While most parents focus on their children achieving milestones, in a cruel irony, for parents of children with childhood dementia, they watch them slowly taken away. While Jude also has an intellectual disability, he is yet to experience the 'rapid regression' like his older sister. 

"I started with a perfectly healthy family" she says. "Then came the diagnosis of Sanfilipo Syndrome, a form of childhood dementia, seven and a half years ago. We were absolutely blindsided. Some days I wake up and think, is this real?"

"You can see it coming, you know what's causing it, but there is nothing you can do to stop it." 

It is indeed difficult to even imagine, yet alone endure. And yet this is the tragic reality of childhood dementia.

Two words that should never go together. 

And we need to talk about it. Urgently. 

Most Australians have never even heard of the devastating illness, despite the fact it is more common than cystic fibrosis. 

There are currently about 700,000 children around the world living with the neurodegenerative brain disease and more than 70 conditions are housed under the umbrella of childhood dementia. 

And yet, less than five per cent of them have effective treatments. None have a cure. 

While it has many similarities with ageing dementia, in many ways it is far more brutal.  

Megan now dedicates her time trying to radically change this 'unacceptable situation', and recently launched a new organisation called the Childhood Dementia Initiative (CDI). that has unveiled some alarming statistics. 

"One of the really shocking things our reports revealed is that childhood dementia has a mortality rate higher than childhood cancer," Megan explains. "Around 48,000 kids died just this year. And yet, it is largely neglected and unknown - and it has no government funding."

CDI's world-first study also showed that the estimated financial cost of childhood dementia to the Australian economy is just under $390 million every year.

"When you look at all these numbers, and consider the impact and horrific nature of the disease, it's actually a really significant problem. And one that requires urgent action." 

Right now, 700,000 young people are living with childhood dementia worldwide. Just like adult dementia patients, these...

Posted by Childhood Dementia Initiative on  Monday, 7 December 2020

CDI's mission is to end childhood dementia by raising awareness and driving a more coordinated research response.

"One of the most promising areas of research is in gene therapy," Megan tells Essential Baby. "And while it is high cost, by collaborating and channelling research to help multiple diseases, we can make a real difference."

Megan adds that another huge challenge is identifying kids early enough to be treated, because once the brain is too damaged the 'therapeutic' window has closed. 

"Prenatal screening is also incredibly important and a big area of focus too," she says. "Ultimately, we believe everyone who plans on becoming pregnant should have access to government-funded genetic testing so they know what they are carriers for."

Photo: Megan's two kids, Isla and Jude, both have childhood dementia.

Photo: Megan's two kids, Isla and Jude, both have childhood dementia.Supplied

It's something Anna, who is also the CEO of the Rare Find Foundation, is passionately fighting for too.

"My husband and I were, in a sense, victims of a statistical nightmare that just grew and grew," she says. "We had no idea we were both carriers of Tay-Sachs when Sebby was born.

"Everyone has genetic mutations and everyone has the right to have access to that information. If you know the risks, at least you can make an informed decision."

Megan's message, along with her admirable vision and strength, is clear.

"Childhood dementia is a dreadful, dreadful thing – but please don't think nothing that can be done," she says resolutely. "We have an incredible opportunity right now to transform how these kids are managed and make a real difference." 

"It may be too late save Jude and Isla, but we can save others. The time to act is now."

If you would like to find out more about Childhood Dementia make a donation, please go to childhooddementia.org or follow them on Facebook.