The Experience Miracles™ Podcast
Welcome to the "Experience Miracles" Podcast w/ Dr. Tony Ebel – where we provide HOPE, ANSWERS, and DRUG-FREE HELP to parents navigating their children’s chronic health challenges. In each episode, we bring you inspiring stories and dig into the latest science of resilience, breakthroughs, and healing shared by fellow moms and leading experts in pediatric health. We’re here to answer all of your burning questions and empower you to advocate for your family! We believe that every child has the capacity to thrive, and no challenge is too big when met with hope and neurological healing. So, it’s time to expect and experience miracles! Join us every Tuesday and Friday!
The Experience Miracles™ Podcast
9. Advocating for your Child: There is HOPE Beyond Diagnosis
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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