Family Shares Emotional Journey After Baby's Rare PKAN Diagnosis, Seeks Gene Therapy Cure

A poignant video shared by a parent on social media highlights the emotional journey of families facing rare disease diagnoses. The 25-second clip features a baby, identified as Madeline, in her crib, interacting affectionately with an adult's hand. An on-screen caption reveals, "Our world ended when we got your diagnosis at 6 months old." The video's author, known as madelines.mission, is actively working to raise $5 million for gene therapy research to combat Pantothenate Kinase-Associated Neurodegeneration (PKAN), the rare condition affecting their child. The post, which has garnered over a million views, aims to raise awareness for PKAN and similar neurological disorders, emphasizing the urgent need for research and support for affected children and their families.

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2 months ago

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