Amber Selvey says she has two other children who are now at risk
Neil Shaw Assistant Editor (Money and Lifestyle)
10:37, 09 Jan 2026
Amber Selvey with husband Jason. (Image: Cover Images)
A mum has bravely spoken out to raise awareness after losing her husband and her son to the same rare illness. Amber Selvey, from Seasalter, Whitstable, wants to help others who are grieving after losing her husband, aged 47, and her son, 24.
Husband Jason died in 2017 and, tragically, their 24-year-old son Daniel died six years later. Both father and son had gone to bed with a cough and cold, but then suffered cardiac arrests from a genetic heart defect.
The mum-of-five, who has two other children with the syndrome, said: “When my husband passed away, it was a massive shock – really unexpected. When you essentially have somebody who’s fit and well and not experiencing any problems, it’s not what you expect in life.”
Amber Selvey, with her son Daniel, daughter and granddaughter. (Image: Cover Images)
Jason had gone to bed with what seemed like a minor illness but “wasn’t breathing right” when he woke up and “passed away quite quickly after that”. Mrs Selvey says caring for her children gave her the strength to carry on and return to her job as a paediatric nurse.
In 2021, Daniel suffered a cardiac arrest at home, but she was able to resuscitate him. Two years later, he died in his sleep. The 51-year-old said: “With child loss, it’s a very difficult one. It’s not one as a society that we like to acknowledge because it means it could happen to most people.
“It’s not the natural order of the world. We shouldn’t lose children before ourselves. It’s not just the child you’ve lost, but it’s their life moving forward.”
Jason and Daniel had Alagille Syndrome, which often goes unnoticed. Jason, a self-employed locksmith, was not diagnosed until after Daniel, their eldest son, was born. Doctors had noticed Daniel had a cardiac condition – and the same issue affected their next child.
Mrs Selvey said: “I was told at the time it was just one of those things, bad luck, nothing related to anything else. I kept being told I was paranoid, wrong.”
Amber Selvey with her son Daniel (Cover Images)(Image: )
But she pushed for genetic testing, which revealed the Alagille Syndrome. Its main symptoms are cardiac issues and narrow bile ducts, which cause liver issues. Mrs Selvey explained: “It’s a multi-organ condition. It can be quite mild liver involvement, jaundice, to needing a liver transplant.
“The other main issue is cardiac. There are lots of things that can be put down to other causes, which makes it difficult for people to diagnose it. My husband didn’t know he had it until the children were tested.”
Mrs Selvey says Jason was told the disorder had only affected his liver mildy and not his heart. “But on his post-mortem, it showed he actually had underdeveloped ventricles, and he’d gone into cardiac failure,” she said. Daniel was known to have a heart defect – thought to be a bicuspid valve. But the post-mortem revealed it was in fact unicuspid – having only one valve rather than three.
Up until his death, he had been a very active and fit young man. Signs of Alagille Syndrome in children can vary, as the disease affects many different areas of the body.
Amber Selvey with husband Jason (Cover Images)(Image: )
It can cause brittle bones, vitamin deficiencies, bone growth problems, and difficulty hearing, among other issues. Youngsters with the disorder often have a wide brow and a narrow, pointy chin. When Mrs Selvey’s children were tested, she was shocked to discover that at that time, there were only 180 people in the UK with the condition – four of them being in her own family.
She is now working with the American organisation Alagille Syndrome Association, which is funding research into the disorder, which has no cure. Mrs Selvey, who works at QEQM and Kent and Canterbury Hospital, has now set up a bereavement support group in Whitstable to help other parents navigate child loss.
She says with Daniel dying at home, there was a lack of support from the authorities. “There are quite a few support groups for women and mothers, but not a lot for men and fathers. So I wanted to make this group and design it so it could be inclusive to both parents,” Mrs Selvey said. “People who’ve had a loss, you can often feel isolated. It’s hard some days to get up and find a reason and a motivation, and we all need that in life. We all need connections. We all need a reason to get up and carry on.”
Jason, and son, Daniel, both died from the same rare syndrome (Cover Images)(Image: )
She came up with the idea while studying counselling, coaching, and mentoring at Canterbury Christ Church University. The Evie Dove Foundation helped fund the degree through two €5,700 (£5,000) grants for her first and second years of study.
Howard Dove, trustee at The Evie Dove Foundation, said: “Amber’s compassion and expertise have a profound impact on children and their families. By funding specialist training for talented paediatric healthcare professionals, like Amber, we can spread Evie’s sparkle and help keep compassion at the heart of paediatric care.”
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