Imagine your brain just... forgets how to sleep. Not the "I had too much coffee" kind of awake, but a literal, physical inability to ever enter a deep sleep cycle again. For Hayley and Lachlan Webb, this isn't a hypothetical horror movie script. It’s their genetic reality.
Honestly, the way people talk about the Webb siblings often feels a bit exploitative, focusing only on the "curse" aspect. But if you look closer, their story is actually about a terrifying race against a biological clock that doesn't stop for anyone.
What exactly is the "Webb Family Curse"?
The scientific name is Fatal Familial Insomnia (FFI). It’s an incredibly rare prion disease—we’re talking maybe 40 families on the entire planet carry this gene.
Basically, a rogue protein in the brain starts misfolding. It targets the thalamus, which is essentially the body's switchboard for sleep and sensory relay. When the thalamus gets hit, the "switch" for deep sleep breaks. Permanently.
Hayley and Lachlan grew up watching this monster take their family members one by one. Their grandmother started showing symptoms and declined rapidly. Then their mother, Narelle, died at age 61. Their aunt passed at 42, and their uncle at just 20.
You've got to realize how heavy that is. Every time you have a restless night, you’d be wondering: Is this it? Is the clock starting?
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The Tragic Turn for Lachlan Webb
For years, the siblings were the face of hope. They appeared on 60 Minutes Australia and partnered with researchers like Eric Minikel and Sonia Vallabh—who, in a wild twist of fate, are also a couple fighting FFI because Sonia carries the gene too.
But in late 2023, the news everyone feared broke.
Lachlan Webb, then 36, had "triggered." The symptoms of FFI usually stay dormant until mid-life, but when they start, the progression is aggressive. Within six months, Lachlan went from being a healthy young dad and husband to being wheelchair-bound.
His sister Hayley, a former Channel Nine reporter, became his vocal advocate and caregiver. She set up a GoFundMe to help support his wife, Claire, and their toddler, Morrison. The details she shared were heartbreaking: Lachlan was losing his eyesight, his speech, and his motor coordination.
Lachlan passed away in late 2024. He was only 36 years old.
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It was a massive blow to the rare disease community. He wasn't just a "case study." He was a father who had to rush through a wedding in June because he knew he didn't have much time left.
Why FFI is scarier than "normal" insomnia
Most people think insomnia is just being tired. FFI is a different beast entirely. Because the brain can't reach REM or deep sleep, it never "cleans" itself.
- Stage 1: Sudden, unexplained insomnia. Panic attacks and phobias often follow.
- Stage 2: Hallucinations. The line between being awake and dreaming disappears.
- Stage 3: Complete inability to sleep. Massive weight loss.
- Stage 4: Dementia and "oneiric stupor" (a state of semi-consciousness) leading to death.
The body stays in a state of permanent "fight or flight." Blood pressure spikes. Heart rate stays high. You're basically running a marathon while sitting still, all while your brain is slowly deteriorating.
Where Hayley Webb Stands Today
As of early 2026, Hayley remains a symbol of resilience in the face of an unthinkable prognosis. Carrying the gene herself, she lives with a 50% chance of developing the same symptoms that took her brother and mother.
But she hasn't just sat back and waited.
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Hayley has been heavily involved in clinical trials and genetic research. A lot of the focus recently has been on Doxycycline, an antibiotic that researchers hope might prevent the misfolded prions from clumping together in the first place. There's also huge momentum in the world of Antisense Oligonucleotides (ASOs). These are "designer drugs" that can actually tell the body to stop producing the protein that causes the disease.
It’s high-stakes science.
Can we actually stop FFI?
Science is moving fast, but for those with the gene, it never feels fast enough.
In 2025, we saw major leaps in how researchers monitor asymptomatic carriers. Using things like PET scans to look at glucose metabolism in the thalamus, doctors can now sometimes see changes before the patient even feels "tired."
The goal is simple: stop the fire before it starts. Once the symptoms trigger—like they did for Lachlan—the damage to the brain is usually too far gone to reverse. Prevention is the only real play.
Actionable insights for those following the story
If you’re following the Webb family or are interested in the fight against prion diseases, here is how the landscape looks right now:
- Support Prion Research: Organizations like the CJD Foundation provide direct support to families and fund the specific research into FFI that the Webbs have championed.
- Genetic Literacy: If your family has a history of early-onset neurodegenerative issues, seeking a genetic counselor is the first step. Knowing is terrifying, but it opens the door to clinical trials that could save your life.
- The Power of Advocacy: Hayley Webb’s decision to go public transformed a "rare curse" into a global conversation. Public awareness is what drives the funding needed for the "designer drugs" that could eventually cure this.
The story of Hayley and Lachlan Webb isn't just about a tragedy. It's a reminder of the fragility of the human brain and the absolute, stubborn grit of the human spirit to keep fighting, even when the lights are being forced to stay on.