Mother Loses Husband and Son to Rare Genetic Disorder

A mother is mourning the loss of her husband and son to Alagille Syndrome, an uncommon genetic disorder impacting roughly one in 70,000 newborns. Amber Selvey's husband, Jason, and son, Daniel, both died suddenly from cardiac failure, six years apart, due to complications from the syndrome.

Alagille Syndrome stems from Jagged1 gene mutations, affecting the liver, heart, and other organs. Amber fought for genetic testing for her children after they experienced cardiac issues, eventually confirming the inherited condition. Her husband had been diagnosed after their first two children showed heart complications.

Now, Amber is raising awareness for Alagille Syndrome and supports a bereavement group. She hopes increased understanding will help others, as the syndrome's severity varies, and early diagnosis can be challenging. Two of her other children also have the condition and require ongoing medical care.