An Indian teenager died this week, who became famous on social media for a video of him helping raise millions for his little brother’s treatment.
Afra Rafeeq, 16, had spinal muscular atrophy (SMA), a rare genetic condition that causes muscle weakness and affects movement and breathing.
He died of complications from the disease at a hospital in Kerala state on Monday, 01/08.
“He enjoyed every possible pleasure in life,” said his father, PK Rafeeq.
Afra’s family and neighbors remember her as a bright and talented young woman who, despite dealing with excruciating pain, loved to sing and study.
But it was a viral video from 2021 that gained fans across the country.
Before that, her father said that Afra didn’t leave the house much. She was diagnosed with SMA at the age of four and left home only to go to school or the hospital, she.
“We’ve been pretty withdrawn and focused our efforts on providing him with the treatment he needs,” she says.
However, later his younger brother Mohammed was also diagnosed with SMA.
The family was “devastated,” says Rafeeq, “because we knew our daughter’s pain.”
Image: AFRA RAFEEQ/YOTUBE
very expensive treatment
SMA is a disease that can be fatal and affects one in 6,000 to 10,000 children. The condition affects motor neurons, spinal cord cells, and gets progressively worse as the child gets older.
Children with SMA have difficulty reaching key developmental milestones such as keeping the neck straight, sitting, standing, and walking.
According to her father, Afra was desperate to ensure that Mohammed received appropriate medical treatment.
This includes access to Zolgensma, a relatively new drug for gene therapy that was approved by the US government in 2019. The drug, one of the most expensive in the world, contains a copy of the gene missing in children with SMA and is given as a single dose. in children under the age of two.
Mohammed was already one and a half years old, so his family’s time was limited. But the cost of the drug was very high.
A dose of Zolgensma costs 180 million rupees (almost R$ 12 million) and has to be imported from the USA.
Since Zolgensma’s approval, several Indians have turned to crowdfunding to purchase the drug, and some have had success after their appeal went viral on the internet. The Indian Ministry of Health allows voluntary crowdfunding for some rare diseases like AME.
Afra’s family turned to multiple sources, including crowdfunding. Your village’s local council has also set up a treatment committee to raise money. However, they managed to collect only a few hundred thousand rupees.
That’s when Afra shot a video with the help of her cousin.
“I don’t want my brother to suffer as I did,” he said in the video posted online.
The video soon went viral on social media and began to appear in the press.
“Suddenly money started coming in from everywhere,” says YL İbrahim, a member of the village council.
Within three days, the funding for Mohammed’s treatment received Rs 467.8 million (more than R$31 million). Afra had to register another public request, this time for 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 Mohammed received his dose of medication, the committee used the extra funds to help two other SMA children and gave the rest of the money to the Kerala government.
Afra says your father “saved” his family.
Image: PERSONAL FILE
Shining with joy, Afra created a YouTube channel to keep people informed about her brother’s progress. In less than a year, he had 259,000 followers. Videos showed him visiting the hospital, spending time at home with his brother and sister, celebrating birthdays and festivals.
He also explained the medical treatment and physical therapy of Muhammed in detail in his videos.
Mohammed, now two years old, can crawl on his own and stand up with a little support.
“She can’t stand or walk on her own yet. But now she has some strength in her legs,” says Rafeeq.
However, Afra’s condition continued to deteriorate. His family says that in the last days of his life he clenched his teeth in pain and barely raised his hands.
His latest video showed the family visiting a hospital in the state capital, Thiruvananthapuram. After the news of his death, thousands of people left messages of condolence on the viral video.
Image: PERSONAL FILE
Afra’s father believes his videos raise awareness about SMA in India.
“I think that was the purpose of his life,” he says. “Many people understood what AME is and what this disease does, thanks to Afra.”
Afra was due to take her school exams later this month and was preparing a lot. His father says he is determined to get the best grades in everything.
The day after her death, she says she cried when she saw a Post-it note affixed to the wall behind her desk, an encouraging message: “You can do this!”
“It reminded me of how many there are all over this house.”
– This text was published at http://bbc.co.uk/portuguese/geral-62418883.
source: Noticias
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