A mother from Kent is channelling her profound grief into a campaign for greater awareness after tragically losing both her husband and her son to the same incredibly rare genetic condition.
A Family's Devastating Double Loss
Amber Selvey, a 51-year-old children's nurse from Whitstable, saw her world shattered when her husband Jason, 47, died suddenly in 2017. In a cruel twist of fate, her son Daniel, 24, passed away in exactly the same manner just six years later. Both deaths were caused by complications from Alagille Syndrome, a genetic disorder estimated to affect only one in 70,000 newborns.
The condition stems from mutations in the Jagged1 gene, leading to fewer bile ducts and impacting the liver, heart, and other vital organs. Symptoms can include jaundice, heart murmurs, and distinctive facial features like a mildly triangular face shape.
A Fight for Diagnosis and a Shocking Inheritance
Amber's journey to understanding her family's health struggles was fraught with challenges. Her husband Jason, a sporty auto locksmith, was seemingly fit and healthy. The family's ordeal began when their first two children were born with heart complications. Medical professionals initially dismissed Amber's concerns, suggesting it was mere coincidence.
"When my second son was born with cardiac problems I thought 'once is bad luck, twice there is more probably going on,'" Amber explained. "They told me that I was a bit paranoid and it was probably just bad luck. In the end I did push for genetic testing."
Blood work eventually confirmed her fears: both sons had inherited Alagille Syndrome from their father. At the time of diagnosis, fewer than 180 people in the UK were identified with the condition—remarkably, four were in her own family.
Sudden and Unexpected Tragedies
The true devastation of the disorder struck without warning. In 2017, Jason developed mild cold-like symptoms before suffering a fatal cardiac arrest in his sleep. In an almost unbearable echo, Daniel, who had been working alongside his father, died in 2023 after developing a cough and then experiencing cardiac failure whilst asleep.
"Obviously my husband wasn't aware that he had any cardiac issues," Amber said. "He was essentially fit and well, a working man with a normal life. It was quite out of the blue and certainly not expected."
The mother-of-five, who has two other children also living with the syndrome, now lives with the constant worry that they could face the same outcome. Her surviving children have undergone operations to widen arteries and repair holes in their hearts, and are leading relatively normal lives, but the shadow of loss remains.
Building a Life Around Grief and Campaigning for Change
Determined to create meaning from her tragedy, Amber has joined the Alagille society in America and facilitates a bereavement support group for parents. She is now a vocal advocate for increased understanding of the condition.
"Like all syndromes it can be quite mild for some people and quite severe for others," she explained. "It doesn't make it easy to diagnose. You may just have one symptom. I do think awareness is important because there are probably a lot more people out there that do have the syndrome and aren't aware."
Amber speaks openly about the enduring nature of her grief, but also of her resilience. "Grief is always there, but you have got to learn to build a life around it," she said. Her campaign aims to ensure other families receive faster diagnoses and better support, potentially preventing future heartbreak linked to this rare but serious genetic disorder.
