9. Advocating for your Child: There is HOPE Beyond Diagnosis

The Experience Miracles™ Podcast

This episode is in honor of Rare Disease Day on February 29th. Dr. Tony Ebel interviews Crystal, a mother of a child with a rare genetic disorder called Sandhoff disease.
They discuss Crystal's journey advocating for proper care and support for her son Cayden, as well as empowering other parents going through similar challenges. The episode emphasizes the importance of advocacy and community in improving quality of life for children with rare diseases and their families.

Key Topics Covered:

• 0:02 - Introduction to Rare Disease Day
• 2:25 - Crystal shares background on her pregnancy and Cayden's birth
• 11:00 - Frustrations getting referrals for physical therapy
• 14:00 - Learning about chiropractic care as an option
• 20:00 - Regression and hitting a plateau with gross motor skills
• 24:00 - Receiving a recommendation to see a specialist
• 36:00 - Increasing chiropractic care for positive changes
• 41:00 - Connecting families to chiropractic within the Sandhoff community
• 47:00 - Overview of PX Docs online community and social media
• 56:00 - Living in disbelief at the progress being made
• 58:00 - Final thoughts on advocacy and empowerment

To Follow More of Cayden’s story on Instagram: @cheeringforcayden

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