Dylan’s Story: A Mother’s Journey Through Limb Difference and Self-Compassion
Release Date: 11/03/2025
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Rebecca’s Story (Part 1): When Juvenile Arthritis Hides in Plain Sight
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Some stories don’t resolve quickly. Some live in the space between crisis and hope. Day after day. Month after month. In the emotional conclusion to this two-part series, Johanna and Peter continue their conversation with Suzie, whose son Zayn continues to battle hypoplastic left heart syndrome (HLHS) and a complex web of GI complications, strokes, feeding struggles, and life-altering medical decisions. Part 2 is a raw look at what happens after the first surgeries, after discharge, after everyone assumes you’re “in the clear.” Suzie shares the moments no parent forgets—the bloody...
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Susie & Zayn (Part 1): A Mother’s Fight Through Hypoplastic Left Heart Syndrome
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Some parents walk into a diagnosis. Others are thrown into it without warning. In this powerful two-part story, Johanna and Peter sit down with Susie, mom of three and mother to Zayn — her brave “heart warrior” born with hypoplastic left heart syndrome (HLHS). Part 1 walks listeners through the moment everything changed: an unsettling 18-week ultrasound, a devastating phone call during their gender reveal, and the first terrifying weeks inside the walls of Boston Children’s Hospital. Susie shares what it was like to navigate pregnancy in the height of the pandemic, advocate alone for...
info_outlineSeason 2 begins with a story that will stay with you.
Today, Johanna and Peter sit down with Dylan, a first-time mom whose daughter, Freya, was born with a congenital limb difference called longitudinal radial deficiency—a rare condition where the forearm bones don’t fully develop. From the shock of her diagnosis at the 20-week ultrasound to finding healing through therapy, family support, and the Lucky Fin Project, Dylan’s story is one of raw honesty, fierce love, and learning to give yourself grace in the midst of uncertainty.
Dylan shares the moment a doctor called her baby’s missing forearm “a cosmetic issue”, the heartbreak of watching her newborn strapped to a medical table, and the relief of discovering she wasn’t alone. Through every twist, Dylan’s voice reminds parents everywhere that compassion for ourselves and for one another is an essential part of the healing process.
In this episode:
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The day Dylan learned her baby would be born without her left forearm
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The frustration of medical providers minimizing this life-changing news
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The power of family support, therapy, and community
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How the Lucky Fin Project and Camp No Limits changed their outlook
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Why “self-compassion” and “grace” became Dylan’s mantras
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Building local connection for families navigating limb differences
Resources from this episode:
- Visit the Lucky Fin Project at their website, luckyfinproject.org, and on Facebook and Instagram @lucky_fin_project
- Visit Camp No Limits at their website, nolimitsfoundation.org, on Facebook, YouTube, TikTok, LinkedIn, and Instagram @campnolimits
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