Dad and son both went to bed with ‘cough and cold’ and died in their sleep
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 from Alagille syndrome, with his son, Daniel, dying of the same condition six years later.
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.
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.
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.
The syndrome impacts just one in every 30,000 to 70,000 births.
‘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,’ Amber added.
‘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, 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’.
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.
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.
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