The Rare Life

204: Abbey's Story | An Ultra-rare Diagnosis, Shifting perspectives + Holding onto Faith


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What do you do when your baby is seizing and the people who are supposed to help you tell you that you’re overreacting?

For Abbey, the fight to be taken seriously began early, and it shaped everything that came next. Her daughter Avery’s rare metabolic disorder (ADSL Deficiency) brought hospital stays, impossible medical decisions, and a long process of learninghow to live with uncertainty.

In this episode, Abbey shares how she became her daughter’s advocate long before she felt ready, what it has meant to reimagine milestones through a different lens, and howshe’s built community when support is scarce. She also talks about the emotional weight siblings carry, and the ongoing, complicated role of faith in Avery’s care.

If you’re learning to acknowledge the hard while still making room for joy, this episode is one you can’t miss.

 

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Access the transcript on the website here.

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The Rare LifeBy Madeline Cheney

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