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Interview with Alexandra Wosleger (Mother of 3) Discusses the WWOX GENE
Manage episode 462130026 series 3310588
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/
143 episodes
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