These siblings have a disease that will one day stop them from ever sleeping again

Top 10 Horrifying Incurable Diseases
Top 10 Horrifying Incurable Diseases

Hayley and Lachlan Webb, a brother and sister from Queensland, Australia, carry a genetic disease called "Fatal Familial Insomnia," for which there is currently no known treatment or cure.

If you haven't heard of the condition before, you are not alone.

The mutated protein that causes the condition, called PrPSc, has been found in just 40 families around the globe, affecting only about 100 people total.

FFI damages nerve cells, which leads to sponge-like holes in the part of the brain that regulates sleep, the thalamus.

This prevents the body from ever achieving deep, rejuvenating REM sleep, and makes it feel as if the sufferer has been awake for the past six months of his or her life.

The stages of the disease include progressively worsening insomnia, which leads to hallucinations, delirium, confusional states like that of dementia and, ultimately, death.

As completely and utterly terrifying as that may all sound, perhaps the worst part of the condition is that they have no idea when it's going to strike.

One day, they will simply wake up and never be able to sleep ever again.

Lachlan, 28, and Hayley, 30, first became aware of the genetic disorder when their grandmother became seriously ill when they were teenagers, according to Nine News.

Their mother died from FFI at 61, while their aunt died at 42. Hayley and Lachlan's uncle, their mother's brother, died from FFI at only 20 years old.

Hayley, who is a reporter for Nine News in Australia, commented on the horror that was watching her own mother succumb to the disease. "I remember leaving for work to my new post on the Sunshine Coast and mum saying 'have a great day, I'm so proud of you,'" she said, "and then later that week coming back and she was calling me Jillian and she thought I was the housekeeper."

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The siblings, "determined to do everything they can to raise awareness and find a cure for this rare and unforgiving illness," have started a GoFundMe page, 100% of the proceeds from which will go directly to the Prion Alliance, which researched FFI and similar diseases.

In just 4 days, they have completed more than half of their $20,000 goal.

According to Business Insider, the pair has also been participating in a pioneering study at the University of California led by Eric Minikel and Sonia Vallabh, who are trying to find a cure.

(h/t The Independent)

Originally published