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Years before his diagnosis, Lachlan Webb knew that an incurable and unpreventable hereditary condition could slowly suck the life from him. But as the father of a one-year-old boy, he hoped he had more time. He hoped he could see his son grow up. Instead, with the “worst-case scenario” unfolding, the Brisbane man’s tragedy-stricken family isn’t sure he’ll be around for Christmas. “To see him deteriorate and lose independence has just been horrific,” said his sister Hayley Webb.
“He hasn’t had any hallucinations at this point, which is in stark contrast to our other family members at this point. “When he was first diagnosed as triggered back in April, we didn’t hold much hope that he would see September.” Fatal familial insomnia, according to the United States’ National Organization for Rare Disorders , is caused by abnormalities in the prion protein which become “toxic to the body”.
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