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Saturday, Aug 20, 2022

Kerala: Remembering Afra Rafeeq, whose viral video saved her brother

Kerala: Remembering Afra Rafeeq, whose viral video saved her brother

An Indian teenager who died this week was a social media star whose video appeal had helped raise millions of rupees for her baby brother's treatment.
Afra Rafeeq, 16, had spinal muscular atrophy (SMA), a rare genetic condition that causes muscle weakness and affects movement and breathing.

She died on Monday at a hospital in the southern state of Kerala after developing complications related to the disease.

"She got every possible joy out of life," her father, PK Rafeeq, says.

Afra's family and neighbors remember her as a bright and talented young girl who loved to sing and study even as she battled excruciating pain.

But it was a viral video in 2021 that won her fans across the country.

Before that, her father says, Afra didn't step out much from her house in Kerala's Kannur district. She had been diagnosed with SMA when she was four, and only left home to go to school or the hospital.

"We were quite private and concentrated our efforts on getting her the necessary treatment," he says.

But then, her younger brother Muhammed was also diagnosed with SMA.

The family was "devastated", Rafeeq says, "because we knew the pain our daughter had already gone through".

SMA is a potentially fatal condition that is likely to occur in one in 6,000-10,000 children. The condition affects the motor neurons — cells in the spinal cord — and gets progressively worse as a child ages.

Children with SMA struggle to achieve key developmental milestones such as holding up their neck, sitting, standing and walking.

Afra, her father says, was desperate to ensure that Muhammed would get the right medical treatment.

This included accessing Zolgensma, a fairly new drug for gene therapy that was approved by the US FDA in 2019. The drug — one of the world's most expensive medicines — contains a replica of the gene missing in children with SMA and is given as a one-time dose to those younger than two years.

Muhammed was already one-and-a-half years old, so his family had very little time left. But "the medicine's cost was unthinkable", Rafeeq says.

One dose of Zolgensma cost 180m rupees ($2.2m, £1.8m) and had to be imported from the US.

Since Zolgensma's approval, several Indians have turned to crowdfunding to access the drug, with some succeeding after their appeals went viral. India's health ministry has allowed voluntary crowdfunding for some rare diseases such as SMA.

Afra's family tapped many sources, including online crowdfunding. Their local village council also formed a treatment committee to collect money. But they could only raise a few hundred thousand rupees.

That is when Afra shot a video with her cousin's help.

"I don't want my brother to suffer the pain I have," she said in the video, which was uploaded online.

It quickly went viral on social media and started getting media coverage.

"Suddenly, money was flowing in from everywhere," says YL Ibrahim, a member of the village council.

In three days, the fund for Muhammed's treatment received 467.8m rupees. Afra had to make another public appeal, asking people to stop sending money.

"We tried so many things but it was her video and what she said that struck a chord with people," Ibrahim says.

After Muhammad received his dose, the committee used the extra funds to help two other children with SMA and gave the rest of the money to the Kerala government.

An "overjoyed" Afra started a YouTube channel to update people on her brother's progress. In less than a year, she had 259,000 subscribers. The videos there showed her visiting the hospital, spending time with her brother and sister at home and celebrating birthdays and festivals.

She would also keenly discuss Muhammed's medical treatment and physiotherapy in her videos.

Muhammed, now two-years-old, is able to crawl by himself and stand with support.

"He can't stand or walk on his own just yet. But there is some strength in his legs now," Rafeeq says.

Afra's condition, however, kept worsening. In the last few days of her life, she would grit her teeth in pain and could barely lift her hands, her parents say.

Her last video showed the family visiting a hospital in state capital Thiruvananthapuram. After the news of her death, thousands of people have left condolence messages under the video.

Rafeeq believes Afra's videos raised awareness about SMA in India.

"I think that was her life's purpose," he says. "So many people understood what SMA is and what it does because of her."

A day after her death, he says, he teared up when he saw a Post-it note stuck on the wall behind her study table with an encouraging message to herself — "You can do!".

"It reminded me just how much of her is in every part of this house."
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