Dad and son both went to bed with ‘cough and cold’ before dying in their sleep

Published 3 days ago
Source: metro.co.uk
NOTE TO EDITORS: Please keep reference to the Evie Dove Foundation in copy / WORDS BYLINE: Millie Bowles / A heartbroken mother has bravely spoken out after losing her husband and son to the same rare genetic disorder. / Amber Selvey, from Seasalter, Whitstable, wants to raise awareness of Alagille Syndrome and help other grieving parents. / Her husband Jason died aged 47 in 2017 and, tragically, their 24-year-old son Daniel inherited the condition and passed away six years later. / Both father and son had gone to bed with a cough and cold, but then suffered cardiac arrests from heart defects related to their condition. / 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." / 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." / Alagille Syndrome affects just one in every 30,000 to 70,000 births, and 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." ...
Only 180 people have the rare condition – and Amber’s family are four of them (Picture: Amber Selvey/Cover Images)

A father and son both died in their sleep after going to bed with runny noses and tickly throats.

Jason Selvey died aged 47 in 2017, and his son, Daniel, died six years later of the same rare illness called Alagille syndrome.

Both Jason and son Daniel, 24, went to bed with a cough and cold before suffering cardiac arrests, wife Amber Selvey says.

Amber, from Seasalter, Whitstable, 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.’

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The mum-of-five says caring for her children gave her the strength she needed to return to work as a paediatric nurse following Jason’s death.

NOTE TO EDITORS: Please keep reference to the Evie Dove Foundation in copy / WORDS BYLINE: Millie Bowles / A heartbroken mother has bravely spoken out after losing her husband and son to the same rare genetic disorder. / Amber Selvey, from Seasalter, Whitstable, wants to raise awareness of Alagille Syndrome and help other grieving parents. / Her husband Jason died aged 47 in 2017 and, tragically, their 24-year-old son Daniel inherited the condition and passed away six years later. / Both father and son had gone to bed with a cough and cold, but then suffered cardiac arrests from heart defects related to their condition. / 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." / 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." / Alagille Syndrome affects just one in every 30,000 to 70,000 births, and 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 said her son, who died of complications caused by the condition, was fit and healthy (Picture: Amber Selvey/Cover Images)
NOTE TO EDITORS: Please keep reference to the Evie Dove Foundation in copy / WORDS BYLINE: Millie Bowles / A heartbroken mother has bravely spoken out after losing her husband and son to the same rare genetic disorder. / Amber Selvey, from Seasalter, Whitstable, wants to raise awareness of Alagille Syndrome and help other grieving parents. / Her husband Jason died aged 47 in 2017 and, tragically, their 24-year-old son Daniel inherited the condition and passed away six years later. / Both father and son had gone to bed with a cough and cold, but then suffered cardiac arrests from heart defects related to their condition. / 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." / 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." / Alagille Syndrome affects just one in every 30,000 to 70,000 births, and 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." ...
The mum also lost her husband, Jason (Picture: Amber Selvey/Cover Images)

Daniel suffered a cardiac arrest – when the heart stops beating – in 2021 but Amber was able to resuscitate him.

Two years later, he died, just as his father did.

Amber, 51, added: ‘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.

What is Alagille syndrome?

Alagille syndrome is a rare, incurable genetic condition that affects bile ducts, which help digest fatty food.

Without the ducts, caustic acid pools in the liver, leading to organ damage and vitamin deficiencies.

Over time, blood vessels between the heart and lungs, as well as in the brain and spinal cord, shrink.

Symptoms include dark pee, pale poop and yellowish, deep-set eyes. Sometimes it leads to liver failure, kidney disease and strokes.

Babies with the condition often have a wide brow and a pointy chin.

The syndrome impacts just one in every 30,000 to 70,000 births.

‘It’s not just the child you’ve lost, but it’s their life moving forward.’

Jason, a locksmith, only realised he was born with Alagille syndrome following the birth of Daniel.

Doctors noticed Daniel had breathing difficulties – something the couple’s next child also showed – so they had him undergo genetic testing.

But health professionals only did so after Amber pushed for it – beforehand, they shrugged it off as ‘bad luck’.

NOTE TO EDITORS: Please keep reference to the Evie Dove Foundation in copy / WORDS BYLINE: Millie Bowles / A heartbroken mother has bravely spoken out after losing her husband and son to the same rare genetic disorder. / Amber Selvey, from Seasalter, Whitstable, wants to raise awareness of Alagille Syndrome and help other grieving parents. / Her husband Jason died aged 47 in 2017 and, tragically, their 24-year-old son Daniel inherited the condition and passed away six years later. / Both father and son had gone to bed with a cough and cold, but then suffered cardiac arrests from heart defects related to their condition. / 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." / 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." / Alagille Syndrome affects just one in every 30,000 to 70,000 births, and 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." ...
The paediatric nurse has since started a support group for grieving parents and guardians (Picture: Amber Selvey/Cover Images)

Her husband’s post-mortem revealed he had underdeveloped ventricles, the heart’s pumping chambers.

Amber says she was shocked by this, given that doctors insisted to her that the syndrome mainly impacts the kidneys.

Daniel, meanwhile, had unicuspid, according to his autopsy. This is when the heart has one valve instead of three.

The QEQM and Kent and Canterbury Hospital worker is now campaigning to bring more national attention to Alagille syndrome.

After all, she says, of the 180 people with the condition, four are in her family.

With the help of the US-based Alagille Syndrome Association, Amber set up a support group in Whitstable to help their grieving parents.

NOTE TO EDITORS: Please keep reference to the Evie Dove Foundation in copy / WORDS BYLINE: Millie Bowles / A heartbroken mother has bravely spoken out after losing her husband and son to the same rare genetic disorder. / Amber Selvey, from Seasalter, Whitstable, wants to raise awareness of Alagille Syndrome and help other grieving parents. / Her husband Jason died aged 47 in 2017 and, tragically, their 24-year-old son Daniel inherited the condition and passed away six years later. / Both father and son had gone to bed with a cough and cold, but then suffered cardiac arrests from heart defects related to their condition. / 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." / 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." / Alagille Syndrome affects just one in every 30,000 to 70,000 births, and 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 said doctors seemed to shrug off her family’s symptoms at first (Picture: Amber Selvey/Cover Images)

They meet every third Wednesday of the month at the Revival Food & Mood café along the High Street.

Amber adds: ‘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.’

She came up with the idea while studying counselling, coaching, and mentoring degree at Canterbury Christ Church University.

Trustee Howard Dove 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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