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Invisible Killer Claims Husband and Son
22 Feb
Summary
- A rare genetic syndrome led to the deaths of a husband and son.
- The condition, Alagille Syndrome, affects multiple organs.
- The mother is campaigning for greater awareness of the syndrome.
A mother is raising awareness after losing her husband and son to a rare genetic condition called Alagille Syndrome. Amber Selvey's husband, Jason, died unexpectedly in 2017 at age 47, initially presenting with cold-like symptoms. Just six years later, their son Daniel passed away in his sleep before his 25th birthday.
Post-mortem examinations revealed both Jason and Daniel had Alagille Syndrome, a multi-organ condition affecting the heart and liver. While Daniel was known to have a heart defect, his condition was more severe than initially thought. Jason was unaware he had the syndrome, with his post-mortem showing underdeveloped ventricles and cardiac failure.
Amber, a children's nurse, is advocating for greater understanding of Alagille Syndrome, which can have varied and often subtle symptoms, making diagnosis difficult. She has established a bereavement support group to aid other parents who have experienced child loss.
