summary

In 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.

takeaways

• Parenting 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.

titles

• Navigating Parenthood with Special Needs
• The Journey of a Special Needs Parent

Sound Bites

• "It's been a huge journey for us."
• "We're just gonna live."
• "It's been a lot to process."

Chapters

00:00

Technical Troubles and Initial Greetings

00:28

Introduction to Alex Wosleger and Her Family

02:49

The Journey of Parenthood and Genetic Challenges

08:46

Connor's Diagnosis and Genetic Insights

12:46

Diet, Nutrition, and Managing Health

15:11

Establishing Routines for Well-Being

18:37

Navigating Seizures and Medical Challenges

21:17

Milestones and Communication Progress

23:51

The Journey of Walking and Independence

27:23

Parenting Dynamics and Relationship Growth

29:37

Coping with Emotional Challenges as a Couple

34:33

Finding Gratitude Amidst Challenges

37:54

Embracing New Beginnings with Quinn

39:44

Navigating Emotions and Mourning

42:26

The Journey of Gene Therapy

46:05

Finding Joy in Daily Life

49:36

Innovative Therapies and Their Impact

53:24

Community and Connection in Parenting

56:48

Advice and Reflections on Parenting

YOUTUBE: https://www.youtube.com/@OutsideTheMilestones

https://www.rarediseaseday.org/friends/the-wwox-foundation/