Aussie stylist Sarah Strozkiy shares son’s terminal Batten disease diagnosis

A Brisbane stylist is overwhelmed by the outpouring of support after sharing her two-year-old son’s devastating diagnosis with a rare, degenerative disease.

Sarah Strozkiy, who goes by the term @shessoseasonal on Instagram, was in tears as she told her 129,000 followers that her two-year-old son Sonny has a progressive condition called Batten disease.

Batten disease is a terminal genetic disorder that prevents cells from clearing away waste.

Watch the video above.

“It starts with speech delay, seizures and imbalance, which he currently has,” Strozkiy said.

“The next stage of that is blindness, not being able to swallow, not being able to move, and then… you know. And there is no cure.”

Strozkiy said life expectancy was between six and 12 years.

Sonny, who turns three in July, was just one of three children in Queensland and one of 16 across Australia living with the disease, his mother said.

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Although Batten is fatal, there is a treatment that can slow the progression of the disease.

Next week, Sonny will undergo brain surgery to place a port in his head, followed by biweekly IVs.

“I think the hardest part about this is that there have been no cases of survivors,” Strozkiy said.

“There are no survivors, so it’s very difficult to have hope. And I keep saying to myself, maybe our story is the first. Maybe. I don’t know what to think.”

In a statement to nine.com.au, Strozkiy said that while her family was devastated, they are “also happy and grateful that [Sonny] came into our lives.”

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In a follow-up video, Strozkiy said she was so grateful for all the support she and her family had received since sharing Sonny’s story, including donations of more than $80,000.

“All I know is that every moment matters, every second counts, and all I know is that my son matters. He is so important to us,” she said.

“I will continue to show up and show you how we live our lives through this crazy, wild horror story that we go through, and that maybe there can be light in these moments.”

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