In this incredibly heartfelt episode, Amy Atkinson opens up about navigating the impossible—the loss of her daughter Delaney to a rare genetic disease called Danon Disease. Amy shares what it was like to juggle being a real estate agent, caregiver, and advocate, all while raising three kids and fighting for her daughter's care. From the devastating day Delaney had a stroke at just 11 years old to the whirlwind of hospital visits, advocacy efforts, and founding a national nonprofit—this conversation is both emotional and inspiring.

Steph and Amy talk candidly about grief, healing, and how the memory of Delaney continues to fuel a mission to educate others and create systemic change around rare diseases and genetic testing. You’ll also hear stories about Delaney’s fearless personality, her cookie-selling charm, her love of theater, and how she inspired everyone around her.

Topics Covered:

• What Danon Disease is and why genetic testing is essential

• The emotional journey of losing a child after a transplant

• How grief transformed Amy’s life and led to the creation of the Danon Foundation

• Advocating for policy change around insurance and genetic testing

• Delaney’s personality and impact on others, from real estate open houses to singing at hospitals

• The healing power of support groups and community

• Advice for those in the thick of grief or facing their own impossible moment

Resources Mentioned:

• • Danon Foundation: http://www.danonfoundation.org/

  • Bradley Center: http://www.bradleycentergrief.org/ Local grief support for children and families

  • Intermountain Healing Hearts: http://ihhearts.org/ Parent-led support network for children with heart conditions

  • Comfort Zone Camp: http://comfortzonecamp.org/ A camp for kids navigating grief and loss

  • Amy Atkinson Real Estate: http://www.amyatkinsonrealestate.com/ Amy’s real estate business rooted in compassion and community

  
  

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