An Australian influencer has shared a devastating family update after her two-year-old son was diagnosed with a rare, degenerative disease.
Stylist Sarah Strozkiy, who goes by the handle @shessoseasonal on Instagram, broke down as she shared the heartbreaking news on Wednesday.
“On May 19 our two-year-old son Sonny was diagnosed with a rare progressive terminal genetic condition called Batten disease,” she said.
“It starts with speech delay, seizures, (loss of) balance – which is what he currently has right now.
“And then the next phase is blindness, not being able to swallow, not being able to move…”
Batten disease is a rare genetic condition that causes cells in the brain to build up waste rather than get rid of it. Sonny’s type, neuronal ceroid lipofuscinosis type 2 or CLN2, progresses rapidly and typically leads to death within the first ten years.
Despite feeling terrified, numb with shock and completely heartbroken, Sarah said: “I’m his mum. He is still my boy. And we are not done fighting.
“We are now in a fight to give Sonny the best possible life through treatment, through research, through advocacy, through awareness, and through whatever miracle the world has left to offer.”
She said Sonny is only one of three children in Queensland, and 16 in all of Australia, living with the condition.
Sonny, who turns three in July, has the option to undergo an invasive treatment regimen which may help delay functional decline associated with the disease’s progression.
However, it involves administering the treatment directly into his brain every two weeks in a six-hour process that the toddler will need to be sedated for. He will also need an initial brain surgery to insert a port that treatment can be administered through.
“He’s only two,” Sarah said, breaking down as she described the process.
A GoFundMe was established for the family while they waited to receive an official diagnosis for Sonny.
It describes Sonny as “funny, brave, and so deeply loved. He lights up a room without trying. He is the most precious gift Sarah and (his dad) Jason have ever been given.
“He loves the moon and the colour orange. He loves their cat Connie and their dog Bubbelo Bill.”
The fundraiser is still active and as of Wednesday has raised more than $73,000 with donations going towards equipment, therapies and time off work for Sarah and her husband Jason to support Sonny.
Sarah said the support the family has received through the platform “has felt like being held by the world.”
“To everyone who has donated, shared, prayed, or simply sent a kind thought into the universe for our boy please know we feel it. All of it,” she said.
Sarah’s Instagram post about Sonny’s diagnosis was also inundated with messages of love including from former Olympic swimmer Libby Trickett who wrote: I’m so sorry Sarah and Jase. Sending all of you love and prayers to the moon and back.
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