A mother from Kent has shared her heartbreaking story to raise awareness after losing both her husband and her eldest son to the same rare genetic illness within six years.
A devastating double loss
Amber Selvey, 51, from Seasalter near Whitstable, lost her husband Jason in 2017 and their son Daniel in 2023. Both were seemingly healthy before going to bed with minor coughs and colds, only to suffer fatal cardiac arrests in their sleep. The cause was a genetic heart defect linked to Alagille Syndrome, a rare multi-organ condition.
Jason, a 47-year-old self-employed locksmith, was not diagnosed until after his eldest son, Daniel, was born. Doctors initially told Mrs Selvey that Daniel's cardiac condition was simply "bad luck" and unrelated to anything else. "I kept being told I was paranoid, wrong," she recalled.
The fight for a diagnosis
It was only through Mrs Selvey's persistence that genetic testing was conducted, revealing Alagille Syndrome in the family. The disorder often goes undiagnosed as its symptoms—which can include cardiac issues, liver problems, brittle bones, and distinctive facial features like a wide brow and pointed chin—are frequently attributed to other causes.
At the time of her children's testing, she discovered there were only around 180 known cases in the UK, with four of them in her own family. Her husband had been told the syndrome only mildly affected his liver, but a post-mortem revealed he had underdeveloped heart ventricles. Daniel, a fit and active 24-year-old, was known to have a heart defect, but his post-mortem showed it was more severe than thought.
Building support from grief
A paediatric nurse at the QEQM and Kent and Canterbury Hospital, Mrs Selvey channelled her grief into action. She has now established a bereavement support group in Whitstable to help other parents navigate the loss of a child, noting a particular lack of support for fathers.
"People who've had a loss, you can often feel isolated," she said. "It's hard some days to get up and find a reason and a motivation, and we all need that in life." Her training was supported by The Evie Dove Foundation, which awarded her two £5,000 grants while she studied counselling at Canterbury Christ Church University.
Mrs Selvey is also working with the US-based Alagille Syndrome Association to fund research into the incurable condition. Her courage in speaking out highlights the hidden dangers of undiagnosed genetic disorders and the enduring need for community support in the face of unimaginable loss.
