🌟 Heartbreak and Hope 🌟
Meet Amber Selvey, a brave mum from Whitstable, Kent, who has faced unimaginable loss but is turning her pain into purpose. Amber’s beloved husband, Jason, and their son, Daniel, both fell victim to the rare Alagille Syndrome – a one-in-70,000 genetic condition affecting the liver, heart, and more.
🧬 What is Alagille Syndrome? It’s caused by a mutation in the Jagged1 gene, leading to fewer bile ducts and impacting crucial organs. Symptoms can include jaundice, heart murmurs, and even unique facial features. Amber’s journey with this condition began when her children were diagnosed with heart issues, prompting her to push tirelessly for answers.
Despite doctors dismissing her concerns, genetic tests revealed the heartbreaking truth: both her sons inherited the condition from their dad, Jason. The disease affects around 180 people in the UK, with Amber’s family accounting for four of those cases.
Tragedy struck in 2017 when Jason, seemingly fit and healthy, suddenly passed away from cardiac failure. Six years later, Daniel also succumbed in a similar, unexpected way. As a children’s nurse and a mum of five, Amber knows all too well the fear of losing a child.
💔 “Losing a child before yourself is against the natural order of the world,” she says. Her surviving children, also carrying the genetic disorder, undergo treatments for their conditions, living as full lives as possible under the circumstances.
Now, Amber is transforming her grief into action, advocating for increased awareness of Alagille Syndrome. She’s joined forces with organisations dedicated to the cause and hosts a bereavement support group for parents grappling with similar losses.
Amber’s message is clear: “Awareness can save lives. Many might unknowingly live with the syndrome without diagnosis.”
We stand with Amber in her fight. Knowledge is power, and her story is a testament to the resilience of the human spirit. Let’s show her our support and spread the word. 💪
#AlagilleSyndrome #AwarenessMatters #FamilyStrength #AmberSelveyStory