- Aussie mum Sarah grew concerned when her son Sonny stopped reaching milestones and began suffering severe seizures at just two years old
- Genetic testing confirmed he has CLN2 Batten disease, a rare inherited neurological condition that causes progressive loss of speech, movement, vision and cognitive abilities
- Determined to make every moment count, Sonny’s parents are fundraising for potential treatment while creating precious memories with their beloved little boy
Here Sarah Strozkiy, 33, North Brisbane, Qld, tells her story in her own words
Holding my arms outstretched as my boy, Sonny, then 11 months, took his first wobbly steps, I was elated. ‘You’re doing it!’ I cheered, as he laughed with glee.
My husband Jason, 34, and I had been overjoyed when I discovered I was pregnant just a month after our wedding. At 12 weeks we found out I was carrying a baby boy. We chose the name Sonny.
When he was born in July 2023, via caesarean, I felt love like never before as we shared our first cuddle.
‘He’s perfect,’ I beamed.
Back home, we adjusted to life as a family of three.
As Sonny grew, it was a joy when he met his milestones, like learning to babble ‘Mama’ and ‘Dada’, crawling, rolling over and clapping. And now watching him take his first steps towards me in June 2024, I felt so very proud.
As he started to learn about his surroundings, Sonny became obsessed with the moon, playfully following it with his finger in the car.
‘Mama, moooon,’ he’d giggle, admiring the night sky glow.
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But after his first birthday, the milestones plateaued and his curiosity stalled.
Sonny stopped learning new words, began to stumble and couldn’t focus. ‘Something isn’t right,’ I told Jason.
I’d encourage our boy to engage or talk more, sounding out words to him, but nothing changed.
Raising concerns with doctors, they weren’t worried. ‘Just give him time and see how he progresses,’ they said.
‘Boys are just slower compared to girls,’ family members assured me, but I knew something deeper was going on.
Then in January 2026, when Sonny was two and a half, he had a seizure while watching TV at home. I watched in horror as my boy suddenly stiffened, before violently convulsing and turning blue.
I called emergency as, terrifyingly, Sonny seized for two minutes.
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Paramedics raced our boy to hospital but, as it was a one-off, doctors were unable to diagnose him with anything, and advised us to monitor him in case it happened again. I felt sick with worry.
For the next two weeks, I barely slept, terrified it’d happen again. Maybe it was a one-time only, I tried to console myself.
But soon the seizures returned, with Sonny suffering three major seizures in six days. Each time our son turned blue.
Back at hospital we demanded the medical team investigate what was happening to our baby boy.
Finally, a paediatrician suggested Sonny might have epilepsy, prescribing anti-seizure medication.
Thankfully, the seizures stopped but Sonny’s condition continued to decline. He frequently lost his balance and constantly trembled. To help protect his head, we even bought him a little helmet.
About two months later, an electroencephalogram (EEG) and an MRI of Sonny’s brain, showed some abnormal changes in his white matter, but it was otherwise unremarkable.
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Frustrated by the lack of answers, we asked to see a neurologist, who ordered genetic testing.
When the results were in three weeks later, we were called into a special room of the hospital.
‘Sonny has Batten disease,’ the doctor said, explaining it was a rare inherited disease that causes a toxic build-up of cell waste in the brain and eyes, leading to progressive loss of vision, movement, and mental skills.
‘Sonny has CLN2 disease – one of the most common forms of the condition,’ he added.
Jason and I were both carriers of the gene, but had never had any symptoms.
The cruel condition generally presents with delayed speech, and epilepsy, before rapidly progressing into cognitive decline, vision loss, and dementia.
I was relieved to finally have a diagnosis but hearing the word ‘incurable’, my world came crashing down. ‘This can’t be real,’ I panicked.
Sonny’s life had barely begun. Now, we were being told he wouldn’t reach adulthood.
I couldn’t fathom it.
Working with Sonny’s neurologist, we decided to try a medication that is administered directly to the brain.
Despite the gruelling procedure, and the hospital trips, Sonny’s condition has continued to progress, including regularly having seizures.
Some days he’s happy and bubbly. Other days he can hardly pick up a spoon or reach for his toys.
Seeing him fading before our eyes is like being stuck in a nightmare we can’t wake up from. Hoping for a miracle, we’re not done fighting.
Recently we learned of a gene therapy treatment available in the United States that could potentially slow the disease’s progression. It’s hoped it could have a significant impact on Sonny’s prognosis.
We were so grateful when our friend Kimberley set up a fundraiser with a goal of $130,000. Kind friends, family and total strangers have contributed more than $125,000 towards Sonny’s treatment.
Although Sonny is showing early signs of dementia, remarkably he still remembers our names – and the moon!
But, heartbreakingly, we’ve been told our beautiful boy’s life expectancy is between six and 12.
To help care for Sonny full-time, I had to give up my job as a fashion stylist, while Jason had to pivot from his role as a radio producer.
But after receiving a care package, which included watercolours and a canvas, from Sonny’s daycare, we discovered an interest in painting. When we shared our creations on social media, our friends loved them. So Jason and I started our business, Sonny’s Canvases, where we sell watercolour paintings, cards and bookmarks showcasing a sweet little rabbit called Sonny Bunny.
It’s inspired by the hope, warmth and beauty we’re choosing to hold onto through life’s hardest seasons with our brave little boy, Sonny.
We’re determined to make as many memories with Sonny, now three, as we can. We’re planning to take our space-obsessed son to NASA and Disneyland in the US, thanks to Tiny Hearts, an Australian company running first-aid courses.
Much like the constellations in the sky, Sonny brings so much brightness to our lives.
He’s our very own little star.
