An Indian teenager who died this week was a social media star whose video attraction had helped elevate hundreds of thousands of rupees for her child brother’s therapy.
Afra Rafeeq, 16, had spinal muscular atrophy (SMA), a uncommon genetic situation that causes muscle weak spot and impacts motion and respiration.
She died on Monday at a hospital within the southern state of Kerala after growing problems associated to the illness.
“She got every possible joy out of life,” her father, PK Rafeeq, says.
Afra’s household and neighbours bear in mind her as a shiny and proficient younger woman who cherished to sing and examine whilst she battled excruciating ache.
But it was a viral video in 2021 that gained her followers throughout the nation.
Before that, her father says, Afra did not step out a lot from her home in Kerala’s Kannur district. She had been recognized with SMA when she was 4, and solely left home to go to highschool or the hospital.
“We were quite private and concentrated our efforts on getting her the necessary treatment,” he says.
But then, her youthful brother Muhammed was additionally recognized with SMA.
The household was “devastated”, Mr Rafeeq says, “because we knew the pain our daughter had already gone through”.
SMA is a doubtlessly deadly situation that’s prone to happen in a single in 6,000-10,000 youngsters. The situation impacts the motor neurons – cells within the spinal wire – and will get progressively worse as a baby ages.
Children with SMA wrestle to achieve key developmental milestones reminiscent of holding up their neck, sitting, standing and strolling.
Afra, her father says, was determined to make sure that Muhammed would get the proper medical therapy.
This included accessing Zolgensma, a reasonably new drug for gene remedy that was permitted by the US FDA in 2019. The drug – one of many world’s most costly medicines – incorporates a reproduction of the gene lacking in youngsters with SMA and is given as a one-time dose to these youthful than two years.
Muhammed was already one-and-a-half years previous, so his household had little or no time left. But “the medicine’s cost was unthinkable”, Mr Rafeeq says.
One dose of Zolgensma price 180m rupees ($2.2m, £1.8m) and needed to be imported from the US.
Since Zolgensma’s approval, a number of Indians have turned to crowdfunding to entry the drug, with some succeeding after their appeals went viral. India’s well being ministry has allowed voluntary crowdfunding for some uncommon ailments reminiscent of SMA.
Afra’s household tapped many sources, together with on-line crowdfunding. Their native village council additionally shaped a therapy committee to gather cash. But they might solely elevate just a few hundred thousand rupees.
That is when Afra shot a video along with her cousin’s assist.
“I don’t want my brother to suffer the pain I have,” she mentioned within the video, which was uploaded on-line.
It rapidly went viral on social media and began getting media protection.
“Suddenly, money was flowing in from everywhere,” says YL Ibrahim, a member of the village council.
In three days, the fund for Muhammed’s therapy obtained 467.8m rupees. Afra needed to make one other public attraction, asking individuals to cease sending cash.
“We tried so many things but it was her video and what she said that struck a chord with people,” Mr Ibrahim says.
After Muhammad obtained his dose, the committee used the additional funds to assist two different youngsters with SMA and gave the remainder of the cash to the Kerala authorities.
Afra, Mr Rafeeq says, “saved” the household.
An “overjoyed” Afra began a YouTube channel to replace individuals on her brother’s progress. In lower than a yr, she had 259,000 subscribers. The movies there confirmed her visiting the hospital, spending time along with her brother and sister at home and celebrating birthdays and festivals.
She would additionally keenly focus on Muhammed’s medical therapy and physiotherapy in her movies.
Muhammed, now two-years-old, is ready to crawl by himself and stand with assist.
“He can’t stand or walk on his own just yet. But there is some strength in his legs now,” Mr Rafeeq says.
Afra’s situation, nevertheless, stored worsening. In the previous couple of days of her life, she would grit her enamel in ache and will barely carry her arms, her mother and father say.
Her final video confirmed the household visiting a hospital in state capital Thiruvananthapuram. After the information of her loss of life, hundreds of individuals have left condolence messages beneath the video.
Mr Rafeeq believes Afra’s movies raised consciousness 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.”
Afra was attributable to write faculty exams later this month and had been making ready onerous. She was decided to get prime marks in each topic, her father says.
A day after her loss of life, he says, he teared up when he noticed a Post-it observe caught on the wall behind her examine desk with an encouraging message to herself – “You can do!”.
“It reminded me just how much of her is in every part of this house.”