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‘1 in 8 billion’: How a devastating genetic anomaly hit 3 Alberta siblings

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Batten Disease in 2020.The genetic disease affects less than one in every 100,000 children.It starts with vision loss, eventually leading to blindness as it shuts down the body.

Some patients develop dementia. Many don’t make it to the age of 20. ‘A deck of cards no one should be dealt’: Ontario siblings fight rare disease, hope for cure The family was still reeling when genetic testing in early June revealed five-year-old AJ also has Batten’s.

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