Emily Otteni : Losing a child to one of the rarest disease in the world (Harlequin Ichthyosis)

What does it mean to keep going when life changes in ways you never could have imagined? In this deeply personal episode of The Good Quest with Farabi, host Farabi Khaleque sits down with Emily Otteni, a mother, educator, Taekwondo instructor, and advocate whose family has faced unimaginable circumstances while navigating life with Harlequin Ichthyosis, an extremely rare genetic skin disorder. Emily and her husband, Nick, became parents to three boys, Miles, Holden & Asher, where the two eldest were both born with the condition. Harlequin ichthyosis requires intensive and lifelong care, bringing challenges that most people could never imagine. But beyond the medical realities is a story about family, motherhood, love, resilience, and the strength it takes to keep moving forward. In this emotional one-hour conversation, Emily opens up about the realities of raising a child with a rare condition, the experiences that shaped her as a mother, and the moments that tested her family in ways they never expected. She also speaks about her son Holden, who tragically passed away at just five months old due to complications related to his condition. Rather than allowing his story to disappear, Emily continues to share his life and her family's experience to help others understand rare disease, challenge misconceptions, and remind people of the humanity behind a diagnosis. The conversation explores grief, motherhood, resilience, advocacy, parenting, loss, hope, self-love, and finding strength in the middle of adversity. Emily also shares what it is like watching her son Miles grow up with harlequin ichthyosis, including the difficult reality of people staring, asking questions, and treating someone differently because of how they look. Her approach to these experiences offers an important lesson about confidence, compassion, and learning to embrace what makes us different. This isn't simply a conversation about a rare medical condition. It's a conversation about love that doesn't disappear, a mother's strength, the pain of losing a child, and the courage to continue telling their story. This episode features : • Emily's journey into motherhood and how her family's story began • What harlequin ichthyosis is and what life with the condition can look like • Raising two children with an extremely rare genetic condition • The realities and challenges of caring for a child with complex medical needs • The emotional impact of living with a rare disease • The importance of educating others and breaking down misconceptions • The experience of dealing with staring, judgment, and unwanted attention • Teaching children to embrace themselves and their differences • Motherhood, strength, and resilience • Emily's journey through grief following the loss of her son Holden • How a parent learns to move forward while carrying profound loss • Keeping a child's memory and legacy alive • The importance of rare disease awareness and advocacy • Finding hope and meaning after unimaginable experiences • What Emily wants people to understand about her children and families living with rare conditions Emily's story is a reminder that we often don't know what someone is carrying behind the moments we see. Sometimes resilience doesn't look like having all the answers. Sometimes it simply means waking up, continuing forward, and finding a way to carry both the love and the loss with you. This is Emily Otteni's story. ⚠️ Content Note: This episode includes discussions surrounding rare disease, medical challenges, grief, and the loss of a child. Listener discretion is advised. 🎙️ The Good Quest with Farabi A CLOUDZILLA Original Follow The Good Quest with Farabi for more honest conversations about life, resilience, mental health, identity, purpose, and the stories that remind us we're never alone in what we experience. #TheGoodQuest #FarabiKhaleque #EmilyOtteni #HarlequinIchthyosis #Disease #Motherhood #Grief #Resilience #MentalHealth #Parenting #Advocacy