A mother shares the raw path from diagnosis shock to confident routines, reflecting on ports, weekly infusions, and letting a wild-hearted kid be a kid. We weigh gene therapy’s promise against real-world insurance battles and the mental health load parents carry, while exploring how creative work online can be a lifeline.
• diagnosis as shock, guilt and rapid learning
• resources from the hemophilia center and support groups
• deciding on a port to make prophylaxis possible
• daily judgment calls on bleeds vs minor injuries
• balancing safety gear with normal play and confidence
• modern therapies lowering bleed rates and damage
• nuanced views on gene therapy and long-term data
• insurance, copays and navigating approvals under pressure
• creative skits, audience growth and handling negativity
• realistic take on TikTok Shop opportunities and burnout
• advice to newly diagnosed parents on grief and new normals
Follow Jess on TikTok and Instagram: @learnwithjess
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