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

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. Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Abbey on Instagram @abbeybenj!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app