The Reality of Raising a Child With a Rare Genetic Condition | Simon Khoury
What happens when you're doing everything you can for your family, but some days it still feels like it's not enough?In this episode of The Betar Project, I'm joined by Simon Khoury, a father of three, husband, business owner and man of faith who shares the reality of raising his daughter Gabriella, who lives with Kleefstra Syndrome an extremely rare genetic condition.Simon opens up about the sleepless nights, emotional toll, financial pressures and sacrifices that come with raising a child with complex needs, while still trying to be present for his wife Vanessa and their other two children.One of the most emotional moments comes when Simon shares the guilt he experienced after having to leave his son in Australia while travelling overseas for Gabriella's medical treatment.We explore how his faith has helped him through some of his darkest moments, the incredible strength of his wife Vanessa, and the importance of looking after yourself physically and mentally so you can continue showing up for the people who need you.Simon also shares what it's like celebrating Gabriella's milestones, advocating for families affected by rare genetic conditions, and navigating one of his biggest fears as a father: who will look after his daughter when he's no longer here?Beyond fatherhood, we dive into cigars, brotherhood, the power of real conversations between men, jiu-jitsu, discipline and building businesses while navigating life's challenges.This is an honest conversation about fatherhood, faith, sacrifice, resilience and finding strength through adversity.TIMESTAMPS00:00 How cigars brought us together 05:43 Psychedelics, spiritual experiences and faith 11:04 The reality of raising Gabriella 17:51 Finding strength through faith 20:40 The financial pressures of caring for a child with special needs 29:34 Advocating for children and families with rare conditions 33:05 How fatherhood changes your perspective 34:33 The guilt of leaving his son behind 39:03 Making memories with his other children 40:40 Celebrating Gabriella's little victories 45:37 Balancing business and family 46:39 Building a mobile whisky and cigar lounge 54:02 Why men need brotherhood and connection 55:27 What does it mean to be a strong man? 59:01 Mental health, training and fatherhood 1:02:39 Teaching children resilience 1:06:43 How faith helps Simon face his struggles 1:08:23 The hardest question a father can ask 1:10:09 What Simon wants his children to remember If this conversation resonates with you, share it with a father, parent or someone who needs to hear it.Subscribe to The Betar Project for honest conversations about fatherhood, faith, relationships, business and becoming the best version of yourself.Follow Simon: Instagram: https://www.instagram.com/simonscigarandspirits/FOLLOW ► Instagram: https://www.instagram.com/nickbetarofficial/Sponsors: Betar Media: https://www.instagram.com/betarmedia/
