Trisomy 18 Explained Through a Family’s Story: Care Decisions, Challenges & Hope

Описание: In this powerful and heartfelt episode, SOFT welcomes Jen and Steve Sogge—parents, physicians, SOFT board members, and the mom and dad of Dane, their beloved son who lived four and a half incredible years with Trisomy 18.
Jen and Steve openly share the story of Dane’s life:
✨ his early diagnosis
✨ the difficult decisions they faced as parents and medical professionals
✨ the moment he entered hospice before his first birthday
✨ and the remarkable night he chose to fight and stay—giving them three more beautiful years.
Through laughter, honesty, and tender memories, the Sogges describe their family’s approach of taking things one step at a time, letting Dane guide their decisions, and creating a lifetime of experiences—hockey games, travel, beach days, roller coasters, and everyday joy.
They also reflect on:
• navigating medical systems as both parents and clinicians
• how advocacy and persistence shaped Dane’s care
• the impact of community, palliative care, and SOFT
• the evolving medical landscape for children with Trisomy 18
• how Dane continues to shape their family and legacy today
This episode is a reminder that every Trisomy 18 journey is unique, every decision is rooted in love, and children like Dane leave a lasting mark far beyond their years.

💙 Need Trisomy 18 or Trisomy 13 Support? Start Here:

📘 New & Expectant Parent Books (Free Download):
https://trisomy.org/expectant-parent
🤝 Connect with SOFT:
https://trisomy.org/contact
🌐 Learn more about SOFT’s mission, resources, and community:
https://trisomy.org

About SOFT
SOFT (Support Organization for Trisomy 18, 13 & Related Disorders) is a nonprofit dedicated to supporting families through education, connection, advocacy, and community. No family should face a Trisomy diagnosis alone.

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