summaryIn this conversation, Alex Wosleger shares her journey as a parent of two children with a rare genetic disorder, discussing the challenges, triumphs, and the importance of community support. She reflects on the diagnosis journey, the impact of diet and therapy, and the dynamics of parenting in the face of adversity. Alex emphasizes the beauty of her children's progress and the lessons they teach her, while also touching on the hope brought by advancements in gene therapy.takeawaysParenting children with special needs is a unique journey.The diagnosis process can be long and challenging.Genetic disorders can significantly impact development.Nutrition plays a crucial role in managing health.Therapies should be enjoyable and engaging for children.Every child develops at their own pace, regardless of challenges.Community support is vital for families with special needs.Finding joy in small milestones is essential.Gene therapy offers hope for children with rare disorders.Parenting requires constant adaptation and learning.titlesNavigating Parenthood with Special NeedsThe Journey of a Special Needs ParentSound Bites"It's been a huge journey for us.""We're just gonna live.""It's been a lot to process."Chapters00:00Technical Troubles and Initial Greetings00:28Introduction to Alex Wosleger and Her Family02:49The Journey of Parenthood and Genetic Challenges08:46Connor's Diagnosis and Genetic Insights12:46Diet, Nutrition, and Managing Health15:11Establishing Routines for Well-Being18:37Navigating Seizures and Medical Challenges21:17Milestones and Communication Progress23:51The Journey of Walking and Independence27:23Parenting Dynamics and Relationship Growth29:37Coping with Emotional Challenges as a Couple34:33Finding Gratitude Amidst Challenges37:54Embracing New Beginnings with Quinn39:44Navigating Emotions and Mourning42:26The Journey of Gene Therapy46:05Finding Joy in Daily Life49:36Innovative Therapies and Their Impact53:24Community and Connection in Parenting56:48Advice and Reflections on ParentingYOUTUBE: https://www.youtube.com/@OutsideTheMilestoneshttps://www.rarediseaseday.org/friends/the-wwox-foundation/

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