The article delves into the heartbreaking journey of a family dealing with the rare disease affecting their daughter, Mariama. It traces her struggle with SELENON-related myopathy, a condition that led to severe respiratory issues. The parents' memories of happier moments juxtapose the profound sadness brought by the illness. The piece highlights the broader context of rare diseases affecting over 350 million globally, emphasizing the need for accessible medical care and early treatment, particularly in regions like Africa where challenges persist.
At home, Lam and her husband Pathe smiled over an old video clip of their daughter beaming as she celebrated her 13th birthday with cake and sparklers.
She visited Fann hospital in Dakar, where neurologist Dr. Pedro Rodriguez measured her lung capacity. He suspects Mariama had SELENON-related myopathy, a muscular dystrophy that causes severe respiratory compromise.
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