Episode Details

In this deeply personal episode of CdLS Connections, Ken Pfalzgraf shares the life and legacy of his daughter Tami, who passed away at age 18 in late 2024 due to complications related to a gastric duplicative cyst associated with Cornelia de Lange Syndrome (CdLS).

Ken reflects on fatherhood, advocacy, music, partnership, and the emotional reality of navigating complex medical systems. Through Tammi’s story, this conversation explores both the joy of raising a child with CdLS and the painful realities of medical dismissal and serious GI complications.

Tami’s original music is featured throughout this episode.

⚠️ Content Note: This episode contains discussion of death and dying, which may be sensitive for some listeners.

In This Episode, We Discuss:

• Gastrointestinal complications in CdLS, including gastric duplicative cysts
• Recognizing when a child’s symptoms may be dismissed
• The emotional toll of medical decision-making
• Fatherhood and partnership in raising a medically complex child
• Education systems and advocating for your child’s potential
• Music as connection, expression, and legacy

Why This Episode Matters

GI complications remain one of the most serious medical concerns in individuals with CdLS. Hearing directly from a parent who experienced these challenges offers invaluable insight for:

• Families navigating grief, sudden death, and advocacy
• Clinicians working with medically complex patients
• Educators supporting students with rare conditions
• Advocates seeking improved awareness and listening within healthcare

This episode bridges lived experience and clinical realities — reminding us that behind every diagnosis is a full and meaningful life.

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If this episode resonated with you, please consider supporting the work of the Canadian CdLS Foundation. Your donation helps keep this podcast free and accessible to families worldwide.
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Thanks for listening to CdLS Connections brought to you by the Canadian CdLS Foundation.

Stay connected with our community at www.canadiancdlsfoundation.com and follow us on social media for more stories, support and updates. Together, we're building awareness and connection for everyone affected by Cornelia de Lange Syndrome.

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