An Australian influencer has shared a devastating family update after her two-year-old son was diagnosed with a rare, degenerative disease. <\/p>\n
Stylist Sarah Strozkiy, who goes by the handle @shessoseasonal on Instagram, broke down as she shared the heartbreaking news on Wednesday.<\/p>\n
\u201cOn May 19 our two-year-old son Sonny was diagnosed with a rare progressive terminal genetic condition called Batten disease,\u201d she said.<\/p>\n
\u201cIt starts with speech delay, seizures, (loss of) balance – which is what he currently has right now. <\/p>\n
\u201cAnd then the next phase is blindness, not being able to swallow, not being able to move\u2026\u201d<\/p>\n
Batten disease is a rare genetic condition that causes cells in the brain to build up waste rather than get rid of it. Sonny\u2019s type, neuronal ceroid lipofuscinosis type 2 or CLN2, progresses rapidly and typically leads to death within the first ten years.<\/p>\n
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Despite feeling terrified, numb with shock and completely heartbroken, Sarah said: \u201cI\u2019m his mum. He is still my boy. And we are not done fighting.<\/p>\n
\u201cWe 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.\u201d<\/p>\n
She said Sonny is only one of three children in Queensland, and 16 in all of Australia, living with the condition.<\/p>\n
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\u2019s progression.<\/p>\n
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.<\/p>\n
\u201cHe\u2019s only two,\u201d Sarah said, breaking down as she described the process.<\/p>\n