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Shewley Parvin

Musa is a brave and resilient six-year-old boy who has captured our hearts with his unwavering strength. Musa is part of a set of twins, and as we witnessed their growth side by side, we couldn't help but notice a significant discrepancy in their developmental milestones. While his twin effortlessly achieved each milestone, Musa encountered challenges in lifting his head and communicating effectively. Filled with concern, we sought medical guidance, only to receive a heart-wrenching diagnosis: Musa has been diagnosed with Beta Propeller Protein Associated Neurodegeneration (BPAN), a rare genetic condition that progressively worsens over time.

Musa's journey has been marked by significant challenges. He is immobile and confined to a wheelchair, with limited control over his head and neck. Over the years, his ability to use his arms and legs has declined, and he now faces the additional burden of progressive scoliosis, a curvature of his spine. Musa also has an unsafe swallow, requiring PEGJ feeding, a tube that delivers food directly to his stomach. His oral and airway control has diminished, necessitating frequent suctioning to maintain his airway clearance and safety.

Recently, Musa's health has changed, making him more susceptible to chest infections. Sadly, this has resulted in multiple hospital admissions within a single year. To complicate matters further, Musa now requires oxygen support during sleep and naps, further highlighting the severity of his condition. Managing his seizures has become an ongoing challenge, demanding constant monitoring and medication adjustments.