Tragic Nightmare: Siblings with Fatal Familial Insomnia Given Weeks to Live
Siblings from Queensland, Australia, are living a heartbreaking nightmare as one battles against fatal familial insomnia (FFI), an extremely rare and devastating disease. Hayley and Lachlan Webb, aged 37 and 35 respectively, were both diagnosed with FFI eight years ago, a disease that causes a rapid deterioration of sleep patterns and leads to debilitating symptoms. This disease, passed down through families by a gene that can remain dormant until it is triggered, has also affected the siblings’ mother and grandmother. The disorder has affected just 50 families worldwide, making it an incredibly rare and misunderstood condition.
Currently, medical professionals are uncertain about what causes the gene to activate, and there is no known cure for FFI. Once awakened, the disease can progress quickly, causing death within weeks or months. This is a devastating reality for Hayley and Lachlan as they face the limited time they have left together.
It is estimated that one in three Brits will experience insomnia at some point in their lives, with long-term insomnia defined as sleeplessness lasting for more than three months. However, FFI is not just a sleep disorder; it is a rare genetic degenerative brain disorder caused by a gene mutation that disrupts the ability to achieve deep sleep. As the severity of the insomnia worsens, it significantly impacts the daily functioning of the individuals affected. They may also experience disruptions to their nervous system, which controls automatic body processes such as temperature regulation, sweating, breathing, and heart rate. The abnormal PRNP gene variant attacks the hypothalamus in the brain, the coordinating center for sleep cycles, hormones, body temperature, and heart rate.
Tragically, Hayley and Lachlan have already witnessed the devastating effects of FFI on their family. Their grandmother succumbed to the disease at 69 years old, while their mother lost her battle at just 61. Additionally, their aunt and two uncles also fell victim to this rare genetic disease. The siblings always knew there was a risk of the disease being triggered, but they never anticipated it striking Lachlan at such a young age. As Lachlan approaches his 36th birthday, his symptoms have become increasingly aggressive, and he is rapidly deteriorating. He now relies on a wheelchair and has experienced a loss of eyesight, physical coordination, confusion, memory loss, and even his ability to speak. Based on the rapid progression of the disease in their other family members, it is estimated that Lachlan has just weeks, possibly months, left.
In light of the dire situation, Hayley has created a GoFundMe campaign to raise funds for Lachlan, his new wife Claire, and their 18-month-old son Morrison. The family hopes to provide Lachlan with the best healthcare available during this incredibly challenging time. Hayley, who is seven months pregnant, feels the anguish of watching her brother’s health decline while also grappling with the overwhelming knowledge that she too will be afflicted by FFI in the future.
During an appearance on the Today Show, Lachlan shared his experience leading up to the diagnosis, describing a sense that something was wrong in the months before the disease took hold. Realizing his memory was deteriorating, he sought testing, and his fears were confirmed. Hayley, visibly emotional, expressed the harrowing nature of this terrible curse that they share and her gratitude that her own children and Lachlan’s son were spared through IVF treatment.
While nothing can alleviate the nightmare they are facing, the family hopes that alleviating some financial burdens will allow them to focus on what truly matters – spending quality time together. The journey they face is heart-wrenching, yet their strength, resilience, and determination to support one another shine through. As they continue to grapple with this tragic reality, the world watches, holding them in their hearts, hoping for a breakthrough in research that will one day bring an end to the suffering caused by fatal familial insomnia.
