It’s the kind of story that sticks in the back of your brain and stays there. You might remember seeing them on 60 Minutes or reading about the "siblings who can’t sleep." Hayley and Lachlan Webb became the faces of a medical nightmare back in 2016, sharing their terrifying reality with the world: they carried the gene for Fatal Familial Insomnia (FFI).
For years, people followed their journey with a mix of awe and dread. They were young, photogenic, and living under a literal ticking time bomb. But as we move through 2024 and look toward the future, the narrative has shifted from one of fearful waiting to a heartbreaking, yet deeply human, reality.
Honestly, the hayley and lachlan webb update 2024 is heavy. It’s not the miracle cure story we all hoped for, but it’s a story about a family that refused to let a "curse" define their capacity to love.
The Heartbreaking News: What Happened to Lachlan?
If you’ve been searching for the latest on the siblings, the reality is sobering. Lachlan Webb, the younger of the two, passed away on November 4, 2024. He was only 37.
It’s hard to even process that. For a long time, the disease was a ghost—something that took their mother at 61 and their grandmother at 69. They hoped they had decades. But FFI is notoriously unpredictable. In April 2023, just a day after his son Morrison’s first birthday, Lachlan’s "switch" flipped. He started experiencing the "trigger" symptoms: memory fog, intense dizziness, and rapid weight loss.
By the time 2024 rolled around, things had progressed with a speed that felt cruel. FFI doesn't just make you tired. It essentially destroys the thalamus, the part of your brain that regulates sleep. You lose the ability to enter REM sleep entirely. Your body enters a state of permanent wakefulness that eventually shuts down your organs.
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Throughout 2024, Hayley was his rock. She organized a GoFundMe to help with his care, and the updates were grueling. Lachlan went from a healthy young dad to being wheelchair-bound, losing his eyesight, and eventually losing the ability to speak. He spent his final months surrounded by his wife, Claire, his son, and Hayley. He died peacefully at home, which, in the context of such a violent disease, is a small but vital mercy.
Understanding FFI: Why This "Family Curse" is So Rare
Basically, FFI is a prion disease. It’s in the same "family" as Mad Cow Disease or Creutzfeldt-Jakob Disease, but it’s way more specific. It’s caused by a mutation in the PRNP gene.
Think of it like a misfolded protein. These proteins (prions) start clumped together in the brain, specifically attacking the sleep cortex. Most people think "insomnia" means you're just really tired. With FFI, it’s like your brain has forgotten how to turn off. You can lay your head down, you can close your eyes, but the restorative stages of sleep—the ones that actually keep you alive—are locked away.
"Your body is not allowing you to rejuvenate at all," Lachlan once said in an interview. "It’s like being awake for the last six months of your life."
It’s ultra-rare. We’re talking about maybe 30 to 70 families on the entire planet who carry this gene. Because it’s so rare, funding for a cure is incredibly hard to come by. Most of what we know about it comes from the Webb family and a few others in Italy who have been open about their diagnosis.
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Where is Hayley Webb Now?
Hayley is still here, and she is still fighting. As of late 2024, she hasn't shown symptoms of the disease triggering, but she lives with the knowledge that she carries the same gene that took her brother, mother, and grandmother.
She has spent the last year being an incredible advocate. She didn't just sit back and wait for the worst. Hayley and Lachlan both made a very conscious choice when it came to their own children. They used IVF with pre-implantation genetic diagnosis (PGD).
This is huge. It means they were able to ensure that their children—Lachlan’s son and Hayley’s children—did not inherit the FFI gene. Even as Lachlan was losing his battle, he knew the "curse" ended with him. His son will never have to wonder if a bad night's sleep is the beginning of the end.
The Science: Is There Any Hope for a Cure?
While there is no cure yet, the Webbs have been part of pioneering research. They worked closely with experts at the University of California, specifically with Eric Minikel and Sonia Vallabh.
Sonia’s story is actually very similar to Hayley’s. She found out she had the FFI gene after her mother died from it, and she and her husband basically quit their jobs to become scientists to find a cure. Their work is currently focusing on "antisense oligonucleotides" (ASOs)—essentially a type of drug that could lower the levels of the "bad" prion protein in the brain before it starts clumping.
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For Hayley, the mission hasn't changed. She’s focused on:
- Awareness: Keeping the conversation going so researchers have the data they need.
- Research Funding: Ensuring that ultra-rare diseases don't get ignored just because they affect fewer people.
- Family: Raising her kids and supporting Lachlan’s widow and son.
Actionable Takeaways from the Webb Family’s Journey
While most of us will never have to face something as rare as FFI, there are real, human lessons we can take from the hayley and lachlan webb update 2024.
- The Power of Genetic Testing: If you have a history of rare neurological issues in your family, talk to a genetic counselor. Knowledge is terrifying, but as the Webbs showed with IVF, it’s also the only way to break a cycle.
- Advocacy Matters: Rare diseases only get attention when people speak up. Supporting organizations like the CJD Foundation or Prion Alliance helps families exactly like this one.
- Cherish the "Normal": It sounds cliché, but seeing how fast Lachlan’s health declined is a stark reminder. A boring, restful night of sleep is a biological miracle that we often take for granted.
The story of Hayley and Lachlan Webb is a tragedy, yeah. But it’s also a story of extreme courage. They took a terrifying, private "curse" and turned it into a public mission to save future generations. Lachlan’s fight ended in 2024, but the work Hayley is doing ensures his legacy isn't just about the disease, but about the cure they’re still chasing.
To support research into prion diseases or to help families dealing with similar diagnoses, you can look into the CJD Foundation or follow updates from the Prion Alliance research teams.