‘My husband and son went to mattress with cough and chilly signs however by no means awakened’
Amber Selvey, from Seasalter, Whitstable, said her husband, Hason had what appeared to be a ‘mild bug’ and wasn’t breathing right -her son, Daniel also suffered the same tragic fate
A brave mum has spoken out after tragically losing both her husband and son to the same devastating rare condition. Amber Selvey, from Seasalter, Whitstable, hopes to raise awareness following the deaths of her 47-year-old husband and 24-year-old son.
Her husband Jason passed away in 2017, with their son Daniel tragically dying six years afterwards. Both father and son had simply gone to sleep with what appeared to be common cold symptoms, but then suffered fatal cardiac arrests caused by an inherited heart condition.
The mother-of-five, who has two other youngsters with the same syndrome, explained: “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.”
Jason had retired for the night with what appeared to be a mild bug but “wasn’t breathing right” when he awoke and “passed away quite quickly after that”.
Mrs Selvey says looking after her children provided her with the resilience to continue and get back to her role as a paediatric nurse.
In 2021, Daniel collapsed at home from cardiac arrest, but she managed to bring him back to life. Two years on, he passed away during his sleep.
The 51-year-old explained: “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 both suffered from Alagille Syndrome, a condition that frequently slips under the radar. Jason, who worked as a self-employed locksmith, wasn’t diagnosed until after Daniel, their firstborn, arrived.
Medical professionals had spotted that Daniel had a heart condition – with the same problem affecting their second child. Mrs Selvey recalled: “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.”
However, she persisted in demanding genetic testing, which uncovered the Alagille Syndrome. The condition’s primary symptoms include heart problems and constricted bile ducts, leading to liver complications.
Mrs Selvey elaborated: “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.”
According to Mrs Selvey, Jason was informed that the syndrome had only mildly impacted his liver and hadn’t touched his heart.
“But on his post-mortem, it showed he actually had underdeveloped ventricles, and he’d gone into cardiac failure,” she revealed.
Daniel was known to suffer from a heart defect – believed to be a bicuspid valve. Yet the post-mortem disclosed it was actually unicuspid – possessing just one valve instead of three. Right up until his passing, he had been an incredibly active and healthy young lad.
Symptoms of Alagille Syndrome in youngsters can differ widely, as the condition impacts numerous parts of the body. It can lead to fragile bones, lack of vitamins, issues with bone development, and hearing difficulties, amongst other complications.
Children with the condition typically have a broad forehead and a slender, pointed chin. When Mrs Selvey’s kids underwent testing, she was stunned to learn that at the time, just 180 people across the UK had the condition – with four of them being her own family members.
She’s now collaborating with the US-based Alagille Syndrome Association, which is backing research into the incurable disorder.
Mrs Selvey, who’s employed at QEQM and Kent and Canterbury Hospital, has established a bereavement support group in Whitstable to assist other parents dealing with the loss of a child.
She explains that with Daniel passing away at home, there was insufficient support from official channels.
“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.”
The concept was born while she was pursuing her degree in counselling, coaching, and mentoring at Canterbury Christ Church University. The Evie Dove Foundation supported her studies with two £5,000 grants for her first and second years.
Howard Dove, a trustee at The Evie Dove Foundation, expressed: “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.”
