- When all three of her children were diagnosed with childhood dementia, Renee Staska, 33, from Adelaide, SA, was heartbroken.
- Devastatingly, her babies are deteriorating before her eyes.
- Now the single mum is determined for her children to experience as much as they can with the time they have left.
Here Renee tells her story in her own words.
As the nurse placed my baby boy, who I’d named Austin, into my arms, I fell instantly in love.
‘You’re so perfect,’ I beamed, his big green eyes staring back at me.
Just 10 weeks earlier, in April 2018, I’d received devastating news about my beautiful boy.
A growth scan at 28 weeks had discovered ascites – an accumulation of fluid in the abdomen.
‘Your baby isn’t compatible with life.’
‘Your baby isn’t compatible with life,’ my obstetrician had advised.
I was heartbroken.
Up until then, I’d had a textbook pregnancy.
Doctors explained it was too late to terminate, though I wouldn’t have anyway.
At home, my mum, Jodie, was watching my other children, Hudson, then four, and Holly, two.
‘I need to have weekly scans to monitor the baby,’ I told her when I got back.
‘I’ll be at every one,’ Mum said supportively.
‘I knew you’d make it.’
I knew I couldn’t give up on my boy.
My kids were already so excited to meet their new sibling, constantly kissing my blooming belly.
Incredibly, with each weekly scan, the fluid reduced, and at 38 weeks I was far enough along to be induced.
When Austin was born breathing, I couldn’t believe my eyes.
‘I knew you’d make it,’ I cried.
Other than having an enlarged liver, spleen and heart, my boy was perfect, and after a week in hospital, he was discharged.
At home, Hudson and Holly showered their baby brother with love.
Cuddling up beside him, they showed Austin their favourite toys and read him their favourite books.
By eight months old, Austin was crawling and pulling himself up on furniture.
‘Austin has Niemann-Pick Type C – childhood dementia.’
At a routine appointment, Austin’s gastroenterologist became concerned that my boy’s liver was still quite enlarged, so he ran some more tests.
He was such a happy-go-lucky bub, ticking off so many milestones, that I assumed the results would be fine.
So when the specialist called six weeks later, nothing could have prepared me for the news.
‘Austin has Niemann-Pick Type C (NPC) – childhood dementia,’ he told me, explaining the disease causes an accumulation of cholesterol and other fatty acids in the body’s cells, affecting the brain and other organs.
Childhood Dementia is a brain condition that affects memory, behaviour, emotions and communication. The complex disorder can be caused by more than 100 rare genetic conditions that mirror adult dementia. These include Niemann-Pick type-C, Batten disease and Sanfilippo syndrome. Children diagnosed with childhood dementia are born with these disorders. Currently, there is no cure, but various support options are available to help families navigate these challenges and enhance their child’s well-being.
What is childhood dementia?
‘It can cause intellectual decline, loss of motor skills and memory,’ he warned, adding that children with symptoms before the age of 18 months were unlikely to see their fifth birthday.
Most kids with dementia only lived until their late teenage years.
My heart shattered into a million pieces. And as it was a genetic condition, I was also advised to have Hudson and Holly tested.
‘There’s a one in four chance they have it too,’ the doctor warned.
‘They’ve all got it.’
‘I don’t want to know,’ I decided.
Neither of them was showing any symptoms, and I couldn’t handle any more heartbreaking news.
A few months later, as Austin’s first birthday approached, the fear of the unknown weighed heavy on my heart.
Wanting to rule it out, I had the other kids tested. A few weeks later, the results were in.
Each child’s experience with dementia is unique. Symptoms may appear as early as birth and progress quickly, while other children may not experience symptoms until their teenage years. However, like adults the condition causes children to progressively lose vital skills, including the ability to write, read, speak, walk and play. The deterioration of brain function can occur over months, years, or decades.
Children with dementia may experience:
• Memory loss
What are the symptoms of childhood dementia?
• Confusion
• Trouble concentrating, understanding, learning and communicating
• Personality changes
• Severely disturbed sleep
• Behavioural issues such as hyperactivity
• Emotional issues like anxiety and fear
‘Hudson and Holly both have the condition,’ a doctor said gently.
‘This can’t be real,’ I sobbed.
All three of my children had been given a death sentence.
‘They’ve all got it,’ I told Mum, collapsing into her warm embrace.
‘We’re going to get through this together,’ she vowed.
Putting on a brave face, we celebrated Austin’s birthday with close friends and family, but behind the scenes I was a mess.
Researching, I found a Facebook support group with families navigating the same condition.
I learned that while there is no cure for NPC, an advantage of early diagnosis is preventative therapies that can help manage some of the symptoms.
Around one in every 2,900 babies are born globally with a condition that causes childhood dementia. In Australia, a child is born with childhood dementia every few days. Half of all children with dementia die by the age of 10 and 70 per cent will pass away before their 18th birthday.
How common is childhood dementia in Australia?
Going to play therapy with a physical therapist once a week, the kids focused on things like learning dances to nursery rhymes and drawing simple shapes.
They also work with a speech therapist once a week.
Returning to hospital every three months, we meet with a series of specialists who monitor the three kids and their symptoms.
Devastatingly, my babies are deteriorating before my eyes.
While they’re still quite physically active, they all struggle with reading and the ability to concentrate for long periods of time.
‘The best outcome is that they will see their late teens or early 20s,’ one specialist said.
The thought of outliving my kids is unbearable.
But determined for my babies to experience as much as they can with the time they have left, I’ve found perspective in becoming a ‘yes’ mum.
‘Can we have pancakes for dinner?’ Austin recently asked, a cheeky grin on his face.
‘Yes, of course we can!’ I agreed.
We also love to go outside and dance in the rain together, and have movie marathon sleepovers in the living room.
Teaming up with Little Heroes Foundation, I’m sharing my story far and wide, wishing to raise some much-needed awareness around childhood dementia.
Together, we’ve raised over $500,000 for scientific research.
Five years on from their diagnosis, the kids’ conditions have progressed, but their personalities continue to shine bright.
Hudson, now 10, loves being outdoors and play wrestling with his siblings. He hopes to one day open his own gym.
Holly, eight, adores gymnastics, dancing, and hopes to captain the next girl’s AFL team here in Adelaide.
Austin, six, loves all things basketball and hopes to one day make it in the NBA.
I can only hope they’ll achieve their dreams before it’s too late.
My kids are living on borrowed time, but we’re not wasting a single minute!
To support kids like Hudson, Holly and Austin, visit littleheroesfoundation.com.au
