When Amber Selvey said her husband and young son went to bed with what looked like nothing more than cough and cold symptoms and never woke up, the horror of her story cut through the familiar comfort of calling an illness “just a bug.” The family from Whitstable believed they were dealing with a minor infection, yet within hours, Jason and his child were gone. Their deaths were later linked to a rare, inherited condition that had quietly shaped their health long before that final night.
For Amber, the shock of losing both her partner and one of her children in a single day has been matched only by the need to understand how a seemingly ordinary winter illness could expose such a devastating vulnerability. Her account has become a stark reminder that, for a small number of families, an underlying disorder can turn routine symptoms into a medical emergency.
The night everything changed
Amber Selvey, from Whitstable, has described how her husband Jason appeared to have a “minor illness” with cough and cold symptoms before going to bed as normal. She later noticed that Jason was not breathing properly when he woke in the night, and he then passed away in his sleep, followed by their son, who had shown similar signs of a mild respiratory bug. In her telling, there was no dramatic collapse or long hospital vigil, only the quiet, incomprehensible reality that two people she loved had slipped away between one ordinary evening and the next morning, a sequence she has relived repeatedly as she has tried to piece together what happened to her family.
In interviews, Amber has stressed how unremarkable those early symptoms seemed, underscoring why she initially believed Jason simply needed rest and time to recover. She has recalled that her husband’s breathing did not seem right when he stirred, and that by the time she realised the seriousness of the situation, he had already gone, a detail later echoed in further reporting that Jason had gone to bed with what seemed like a minor illness and then “wasn’t breathing right” when he woke up and died in his sleep. The same night, their son, who had also gone to bed with cough and cold complaints, never woke up either, a double loss that Amber has described as a massive shock that could happen to most people who assume a common infection is harmless, as reflected in accounts of Amber Selvey and the way Jason died in his sleep.
A rare condition hidden behind a ‘minor illness’
Only after Jason and his son died did doctors fully explain the rare condition that had been affecting them, a diagnosis that helped clarify why a routine cough could become so dangerous. The family learned that the father and son were living with a multi-organ disorder that can involve the liver, bones and other systems, and that what looked like a simple respiratory infection had in fact tipped an already fragile balance inside their bodies. For Amber, understanding that this was not a random fluke but the result of a specific inherited problem has been both a source of anger and a framework for making sense of her loss.
Paediatric nurse Mrs Selvey, who has spoken publicly about the condition, has described it as a multi-organ disease that can range from mild liver involvement and jaundice to the need for a liver transplant, and has explained that it is linked to missing bile ducts that allow caustic acid to pool in the liver, causing organ damage and vitamin deficiencies over time. She has also highlighted that the disorder can be associated with heart abnormalities, such as having one valve rather than three, and that it can cause brittle bones, bone growth problems and difficulty hearing, a cluster of complications that may not be obvious until a crisis occurs. Medical descriptions of the same condition note that without the ducts, acid builds up in the liver and that it is thought to affect roughly one in every 30,000 to 70,000 births, details echoed in coverage of Mrs Selvey, her explanation that it’s a multi-organ, the way it can cause brittle and the warning that without the ducts the disease can quietly progress from birth.
Grief, resilience and a warning for other families
In the months since losing Jason and her son, Amber has spoken about the daily work of getting out of bed, caring for her surviving children and returning to her role as a paediatric nurse. She has said that looking after her other children has given her the strength to carry on and to go back to work, even as she continues to process the trauma of that night. Her experience mirrors that of Mrs Selvey, who has described how caring for her children helped her get up and carry on after losing close family members to the same condition, a form of resilience that does not erase the grief but channels it into advocacy and care for others.
Both women have used their stories to urge families and clinicians to take persistent or unusual symptoms seriously, particularly when there is a known history of liver problems, jaundice or unexplained bone and hearing issues in a child. They have stressed that while this rare condition affects a relatively small number of people, its consequences can be catastrophic if it remains undiagnosed, especially when a common infection adds extra strain to already compromised organs. By speaking publicly, Amber and Mrs Selvey hope that other parents will push for answers when something feels wrong, and that more clinicians will recognise the subtle signs of a disorder that can hide behind what looks like an ordinary cough and cold until it is too late.
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