Father and Son Both Die in Their Sleep

In a story that will break hearts and stir souls, a devoted mother and wife has come forward with a haunting warning after losing both her husband and son to the same invisible killer — and now lives in fear for her remaining children.

Amber Selvey, a nurse from Seasalter and mother-of-five, is turning unimaginable grief into action, raising awareness about a rare genetic illness that snatched her husband and eldest son in their sleep just years apart — and now lurks in her family's bloodline.

Two Sudden Deaths, One Devastating Diagnosis

Amber's beloved husband Jason, just 47, passed away in 2017. Her son Daniel, 24, died six years later in 2023. Both had gone to bed with what seemed like harmless coughs and colds — only to never wake up again.

The cause? Alagille Syndrome (ALGS) — a little-known but life-threatening genetic condition that impacts the heart, liver, kidneys, and more.

"When my husband passed away, it was a massive shock — really unexpected," Amber told The Mirror. "When you essentially have somebody who's fit and well and not experiencing any problems, it's not what you expect in life."

Jason's death began like any other night. He went to bed feeling unwell — but by morning, he wasn't breathing right.

"[He] passed away quite quickly after that," Amber recalled.

'It's Not the Natural Order of the World'

In a horrifying echo of her husband's fate, Daniel — her firstborn — suffered a cardiac arrest at home in 2021. Amber was able to resuscitate him, but tragedy struck again just two years later. He died suddenly in his sleep.

"With child loss, it's a very difficult one," Amber shared. "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," she added. "We shouldn't lose children before ourselves. It's not just the child you've lost, but it's their life moving forward."

Both Jason and Daniel suffered from ALGS — but neither were diagnosed until it was too late.

Dismissed and Misdiagnosed: 'I Was Told I Was Paranoid'

Jason, a self-employed locksmith, wasn't even diagnosed until after Daniel was born. Doctors noticed a heart condition in their baby — and eventually in his younger sibling.

"I was told at the time it was just one of those things, bad luck, nothing related to anything else," Amber said. "I kept being told I was paranoid, wrong." Despite being dismissed, she pushed for genetic testing until the condition was diagnosed.

Jason was assured the syndrome only mildly affected his liver — and not his heart. But the post-mortem revealed the terrifying truth: underdeveloped ventricles and cardiac failure.

On the other hand, Daniel's doctors believed he had a bicuspid valve. After his death, they discovered it was unicuspid — a far rarer and more dangerous defect.

A Rare Illness With Devastating Reach

ALGS affected an estimated 180 people in the UK at the time that Amber's children were tested, a discovery that left the 51-year-old horrified, as four of them were in her family.

The condition can strike multiple organs and cause symptoms ranging from vitamin deficiencies and brittle bones to hearing loss and slowed growth. It's also linked to distinct facial features — such as a wide forehead and narrow chin.

Two of Amber's other children also have ALGS.

Now, she's joined forces with the Alagille Syndrome Association, a US-based organisation funding research into this incurable and often overlooked disease.

Turning Grief Into Hope: Together in Grief Launches

Amber is no stranger to heartbreak — but she's also no stranger to healing.

The longtime NHS nurse, who works at QEQM and Kent and Canterbury Hospital, has launched Together in Grief, a bereavement support group in Whitstable, to give parents who've lost children a place to share their pain and find connection.

Meetings take place at Revival Food and Mood every third Wednesday of the month from 7 p.m. to 8 p.m.

Amber first conceived the idea for the group while studying for her Counselling, Coaching, and Mentoring degree at Canterbury Christ Church University.

Her training was made possible by the Evie Dove Foundation, a charity created in memory of 13-year-old Evie Dove, who died of brain cancer. The foundation has raised over £425,000, funding training for 200+ children's healthcare professionals across the UK.

Amber received two grants totaling £10,000 for her degree — the second made possible by The Royal St George's Golf Club, whose members were deeply moved by her story.

"Amber's story moved all of us," said Rob Moulsdale, a Trustee at the club. "Her commitment to supporting families is extraordinary, and we are proud to help make her training possible via The Evie Dove Foundation."

'We All Need a Reason to Carry On'

With over 20 years of experience in paediatric nursing, Amber understands what loss looks like — and how often it's carried in silence.

"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. We all need connections. We all need a reason to get up and carry on."

Now, she hopes Together in Grief will give bereaved parents a space to talk, listen, and connect with others who truly understand their pain.