A seemingly harmless cold tragically became a fatal event for a family in Whitstable, United Kingdom. Both a father and his son, each living with alagille syndrome, unexpectedly passed away in their sleep after experiencing mild symptoms like a cough, congestion, and a sore throat. This rare genetic condition, as it turned out, was silently impacting their hearts.
Jason Selvey, 47 years old, died in 2017 after going to bed with what he believed was a common cold. His wife, Amber Selvey, recalls that nothing indicated a serious health risk. “He was a healthy,strong man with no prior issues; I never imagined he wouldn’t wake up,” she stated.
Following his death, an autopsy revealed underdeveloped ventricles in his heart, a complication directly linked to Alagille syndrome.
Raising Awareness of Alagille Syndrome: A Family’s Fight
Six years later, history repeated itself with the couple’s eldest son, Daniel, 24. He also went to bed with minor symptoms and suffered a cardiac arrest during sleep. Daniel had experienced a similar incident in 2021, when his mother successfully revived him at home, but this time, resuscitation efforts were unsuccessful.
Amber Selvey,a mother of five and a pediatric nurse,described the loss of her son as devastating. “The death of a child is something society often avoids confronting, as it reminds us that it can happen to anyone; it’s not the natural order of things,” she explained.
Alagille syndrome, occurring in approximately 1 in 30,000 to 70,000 births, is a genetic disorder that disrupts the progress of bile ducts, possibly leading to liver, heart, kidney, and blood vessel complications. Recent studies from the National Institutes of Health (NIH) in late 2025 indicate a possible increase in diagnostic rates due to improved genetic screening technologies.
In many instances, the condition remains undetected for years, as was the case with Jason, who wasn’t diagnosed until after Daniel’s birth.
Amber remembers that her concerns were frequently dismissed by medical professionals for a long time.”I was told it was bad luck, that I was overreacting, but something didn’t feel right,” she shared. After persistent requests, genetic testing was performed, confirming the diagnosis in several family members.
Today, Amber has channeled her grief into advocacy. With the support of the Alagille Syndrome Association and the Evie Dove Foundation, she established a support group in Whitstable for families who have experienced loss due to this condition. “those navigating such grief often feel isolated; we need connection and a reason to move forward,” she asserts.
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