WATCH | Popular Kerala teen whose viral video raised millions for her brother’s treatment dies

A social media star from India who passed away last week raised millions of rupees for the care of her young brother through a video appeal. Spinal muscular atrophy (SMA), a rare hereditary disorder that causes muscle weakness and impairs mobility and respiration, was found in 16-year-old Afra Rafeeq. After experiencing disease-related problems, she passed away on Monday at a hospital in Kerala, a state in southern India.

Family members and neighbours of Afra recall her as a gifted young woman who loved to sing and learn despite suffering from great pain. In 2021, a trending video helped her gain nationwide popularity. Her father claims that prior to the incident, Afra rarely left her home in Kerala’s Kannur district. She only left the house to go to school or the hospital after receiving her SMA diagnosis at the age of four. Then, though, Muhammed, her younger brother, was also identified as having SMA.

SMA is a potentially fatal disease that affects one in 6,000 to 10,000 kids. As a child ages, the problem worsens because it affects the motor neurons, which are spinal cord cells. Key developmental milestones like holding up their neck, sitting, standing, and walking are difficult for kids with SMA to accomplish. According to her father, Afra fought tooth and nail to make sure Muhammad received the proper medical care.

This included having access to Zolgensma, a relatively new gene therapy medication that the US FDA authorised in 2019. The medication, which is among the most expensive in the world, contains a copy of the gene that is missing in SMA patients and is administered as a single dosage to children under the age of two. By the time Muhammad became one and a half years old, his family had little time left.

But Afra’s situation only became worse. Her parents claim that in the final days of her life, she would clench her teeth in agony and hardly be able to lift her hands. The family was seen in her most recent video visiting a hospital in the state capital Thiruvananthapuram. Thousands of people have posted condolence messages under the video once it was made public that she had passed away.

(with inputs from agencies)

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