House to Harmony: Redefining Family Life with Unique Challenges.
The UNspecial Podcast · UNspecial LLC
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Show Notes
On the Unspecial podcast, Annika Warley shares how her twin daughters, Hazel and Hadley (turning five), were diagnosed with spinal muscular atrophy (SMA) type 2 after being premature NICU babies whose missed milestones were repeatedly dismissed as prematurity. She describes SMA types, the importance of early newborn screening, and treatments that stop progression (Zolgensma, Spinraza, Evrysdi), plus a newer muscle-building drug trial she calls “muscle juice,” and how outcomes vary widely. Annika discusses the emotional waves of grief and hope, daily logistics and advocacy demands, insurance and Medicaid loss limiting therapies and equipment, fundraising for intensive “NAPA” therapy, and balancing therapy with childhood. She explains creating “House to Harmony” to build sustainable routines, meal planning, and promote accessibility and inclusion, grounding her journey in faith and encouraging parents that a diagnosis doesn’t define their child.
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