Dad went to bad coughing and died of cardiac arrest, years later the same tragedy struck his son

A mother in Kent, England is sharing her family’s devastating story after losing both her husband and son to sudden cardiac arrest, years apart, due to an undiagnosed genetic condition.

Amber Selvey said her husband, Jason, died unexpectedly in 2017 at age 47 after going to bed with what appeared to be a minor cough, only to suffer a fatal cardiac arrest during the night.

Years later, Amber faced an unimaginable loss again when her son Daniel collapsed and died from cardiac arrest just days before his 25th birthday.

Doctors later determined that both deaths were linked to Alagille syndrome, a rare genetic disorder that can affect the liver, heart and other organs and is often difficult to diagnose because symptoms vary widely from person to person.

According to Amber, the condition in her family primarily affected the heart, allowing serious abnormalities to go unnoticed for years. Daniel had previously survived heart failure and a cardiac arrest in 2021, which eventually led doctors to order genetic testing after additional family members began showing related symptoms.

That testing revealed that three of Amber’s five children also carry the syndrome, despite Jason and previous generations being unaware of the condition. “When cardiac issues occur without obvious liver disease, the underlying genetic link can be missed,” Amber said, explaining how easily the warning signs can be overlooked.

Now, Amber hopes that sharing her family’s experience will raise awareness about rare genetic disorders and encourage earlier testing and intervention, potentially saving lives and sparing other families from similar heartbreak.