Beyond the Wheelchair: My Personal Mission to Overcoming Stereotypes

Parenting/ Health

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Spinal muscular atrophy (SMA) is a rare genetic disorder affecting essential muscles used for movement, respiration, and swallowing. This condition arises due to the absence of a functional SMN1 gene, vital for producing a protein that preserves motor neuron health; without it, these neurons degenerate, causing varying degrees of muscle weakness.The presentation of SMA can differ widely among individuals, influenced by the presence of the SMN2 gene, which can generate some protein, providing limited compensatory support. More copies of this gene often correlate with milder symptoms. Since lost motor neurons cannot regenerate, those with SMA frequently require assistance with breathing, nutrition, or mobility to achieve an independent life.For countless young individuals like Siara, an 18-year-old filmmaker living with SMA Type 3, their experience informs rather than limits their identity. Siara aspires to reshape narratives within film, believing in the power of authentic representation on screen.

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