- Meryl Sebastian
- BBC News, Kochi
4 hours
image source, Afra Rafeeq/YouTube
Afra Rafeeq and her brother Muhammed were diagnosed with spinal muscular atrophy.
He was quite a social media star in India.
just last year, Afra Rafeeq16, posted a video that helped raise crores of rupees for the treatment of his little brother, who suffered from spinal muscular atrophy (SMA).
It is a rare genetic condition, which causes muscle weakness and affects movement and breathing. It’s the same Afra Rafeeq suffered from it.
He died last Monday in a hospital in the southern state of Kerala, following developing complications related to the disease.
“She had every possible joy in life,” said her father, PK Rafeeq.
Afra’s family and neighbors remember her as a bright and talented young woman who loved to sing and study, even when battling excruciating pain.
But it was a video viral en 2021 the one that gave him millions of admirers across the country.
Before that, her father says, the teenager did not leave her home in Kerala’s Kannur district much. She had been diagnosed I loved when I had 4 years and he only left the house to go to school or to the hospital.
“We were pretty secretive and focused our efforts on getting him the necessary treatment,” he says.
But then to his younger brother, Muhammedwas also diagnosed with SMA.
The family was “devastated,” the father explained, “because we knew the pain our daughter had already been through.”
all for his little brother
SMA is a potentially fatal condition that occurs in one in 6,000 to 10,000 children. The condition affects the motor neurons (spinal cord cells) and gets progressively worse as the child gets older.
Children with SMA have difficulty achieving key developmental milestones, such as neck support, sitting, standing, and walking.
image source, Afra Rafeeq/YouTube
Afra loved spending time with her brothers, Muhammed and Anzila.
Afra, her father says, was desperate to make sure Muhammed received proper medical treatment.
This included accessing Zolgensmaa fairly new drug for gene therapy that was approved by US health authorities in 2019.
The drug, one of the most expensive in the world, contains a replica of the gene that is missing in children with SMA and is given as a single dose to children under 2 years of age.
Muhammed Rafeeq was already a year and a half old, so his family had very little time left. But “the cost of the medicine was unthinkable,” says his father.
A dose of Zolgensma costs regarding 180 million rupees ($2.2 million dollars) and it has to be imported from the US.
Internet calls
Since Zolgensma’s approval, a number of people in India have taken to fundraising to access the drug, with some succeeding following their petitions went viral.
Afra Rafeeq’s family searched various sources, including the online collection. His local village council also formed a committee to collect money. But they were only able to raise a few hundred thousand rupees.
It was then that Afra Rafeeq recorded a video with the help of her cousin.
“I don’t want my brother to suffer the pain that I have,” he said in the video posted online.
image source, PK Rafeeq
The family was devastated following two of their children were diagnosed with the disease.
It quickly went viral on social media and started getting media coverage.
“Suddenly money was flowing from everywhere,” says YL Ibrahim, a member of the village council.
Within three days, the fund for Muhammed Rafeeq received 467.8 crore(more than twice as necessary). Her sister had to make another public appeal, asking people to stop sending money.
“We tried a lot of things, but it was his video and what he said that moved people,” says Ibrahim.
After Muhammad received his dose, the committee used the additional funds to help two other children with SMA and handed over the rest of the money to the Kerala government.
Afra, her father says, “saved” the family.
“It was the purpose of his life”
An “overjoyed” Afra Rafeeq opened a YouTube channel to let people know regarding her brother’s progress.
In less than a year, he had 259,000 subscribers. Videos of her showed her visiting the hospital, spending time with her siblings at home, and celebrating birthdays and festivals.
He also spoke in depth regarding Muhammed’s medical treatment and physiotherapy.
The boy, who is now 2 years old, can crawl on his own and tries to stand up.
“He still can’t stand or walk on his own. But now he has some strength in his legs,” says his father.
image source, PK Rafeeq
“You can do it!” Afra Rafeeq told himself to encourage himself to continue fighting the disease.
However, Afra’s condition continued to worsen. In the last days of her life, he clenched his teeth in pain and he might hardly raise his hands.
His latest video showed the family visiting a hospital in the state capital, Thiruvananthapuram. Following the news of his death, thousands of people have left messages of condolence under the video.
PK Rafeeq believes his daughter’s videos raised awareness of SMA in India.
“I think that was the purpose of his life”, He says. “A lot of people understood what SMA is and what it causes.”
Afra Rafeeq was due to take school exams at the end of this month and had been preparing hard. She was determined to get top grades in all subjects, her father says.
A day following his death, the man says he cried when he saw a piece of paper taped to the wall behind his study table with an encouraging message to herself: “You can!”.
“It reminded me how much of her is in every part of this house.”
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