In this episode, host Alison focuses on a personal story rather than running. She shares the story of her daughter, Charlotte Grace, who was diagnosed with Trisomy 13, a rare genetic condition often labeled "incompatible with life." Despite grim medical expectations, Charlotte was born full-term, lived for six days, and defied many statistics. Alison discusses the lack of support and outdated information she received from medical professionals, as well as the hope she found through online communities. She also explains Trisomy 13 and 18, their prevalence, and the evolving medical understanding of these conditions, emphasizing the importance of raising awareness and providing accurate information to families facing similar diagnoses. The experience led to the creation of the “Compatible with Life Virtual 5K”, which honors Charlotte’s legacy and supports families facing similar diagnoses. Alison emphasizes the need for better awareness, more balanced medical information, and a supportive community for parents navigating rare Trisomy conditions.

Resources Mentioned:

• Resources for families of children with Trisomy 13 or 18:
  • SOFT - Support Organization For Trisomy
  • The Stella Effect
  • Extra to Love
  • Verity’s Village
  • Abel Speaks
• Compatible With Life Virtual 5k: Learn more about the Compatible with Life 5k and get on the interest list for the next event HERE.

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