Afra Rafeeq/YouTube A good Indian teenager who seem to died this week was obviously a social media star in whose video appeal had helped raise countless rupees for her baby brother’s treatment.
Afra Rafeeq, sixteen, had spinal muscular atrophy (SMA), an unusual genetic condition that causes muscle weakness plus affects movement plus breathing.
The girl died on Mon at a hospital within the southern state of Kerala after establishing complications related to the disease.
“She got create joy out of life, ” her dad, PK Rafeeq, says.
Afra’s family and nearby neighbours remember her like a bright and gifted young girl which loved to perform and study even while she battled severe pain.
But it was a viral video within 2021 that earned her fans across the nation.
Before that, the girl father says, Afra didn’t step out a lot from her house in Kerala’s Kannur district. She have 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 the girl the necessary treatment, inch he says.
But then, the girl younger brother Muhammed was also diagnosed with SMA.
The family has been “devastated”, Mr Rafeeq says, “because all of us knew the pain our daughter had already gone through”.
Afra Rafeeq/YouTube
SMA is a potentially fatal condition that is likely to happen in one in 6, 000-10, 000 kids. The condition affects the particular motor neurons — cells in the spinal cord – and gets progressively worse as a child ages.
Children with SMA struggle to accomplish key developmental milestones such as holding up their own neck, sitting, position and walking.
Afra, her father says, was desperate to make sure that Muhammed would get the right medical treatment.
This incorporated accessing Zolgensma, a reasonably new drug intended for gene therapy which was approved by the US FOOD AND DRUG ADMINISTRATION in 2019. The particular drug – one of the world’s most expensive medications – contains a look-alike of the gene lacking in children with SMA and is provided as an one-time dose to those younger than two years.
Muhammed was already one-and-a-half years of age, so his family had very little period left. But “the medicine’s cost has been unthinkable”, Mr Rafeeq says.
One dose of Zolgensma price 180m rupees ($2. 2m, £1. 8m) and had to be brought in from the US.
Since Zolgensma’s authorization, several Indians have got turned to crowdfunding to reach the drug, which includes succeeding after their appeals went virus-like. India’s health ministry has allowed voluntary crowdfunding for some rare illnesses such as SMA.
Afra’s family tapped numerous sources, including on the web crowdfunding. Their local village council furthermore formed a treatment committee to collect money. However they could only increase a few hundred 1000 rupees.
Then Afra shot a with her cousin’s help.
“I don’t want my brother to suffer the pain I have, ” the lady said in the video, which was uploaded online.
It quickly went viral upon social media and began getting media insurance.
“Suddenly, money had been flowing in from everywhere, ” says YL Ibrahim, a member of the village council.
In three days, the fund pertaining to Muhammed’s treatment received 467. 8m rupees. Afra had to make another public appeal, asking people to end sending money.
“We tried so many things but it was her movie and what she stated that struck a blend with people, ” Mister Ibrahim says.
After Muhammad received their dose, the committee used the extra funds to help two some other children with SMA and gave the rest of the money to the Kerala government.
Afra, Mr Rafeeq says, “saved” the family.
Courtesy PK Rafeeq
An “overjoyed” Afra began a YouTube funnel to update individuals on her brother’s progress. In less than a year, the lady had 259, 000 subscribers. The video clips there showed her visiting the hospital, spending time with her brother and sister in your own home and celebrating 1st birthdays and festivals.
She would also keenly talk about Muhammed’s medical treatment and physiotherapy in the girl videos.
Muhammed, today two-years-old, is able to crawl by himself plus stand with support.
“He dislike or walk on his own just yet. But there is certainly some strength in his legs now, ” Mr Rafeeq says.
Afra’s condition, however , kept worsening. In the last few days of her life, she would grit her teeth within pain and could hardly lift her hands, her parents state.
Her last video showed the family visiting a hospital within state capital Thiruvananthapuram. After the news of her death, thousands of people have left condolence messages under the video clip.
Courtesy PK Rafeeq
Mr Rafeeq believes Afra’s video clips raised awareness regarding SMA in India.
“I think that was her life’s purpose, ” he says. “So many people understood exactly what SMA is and exactly what it does because of her. ”
Afra has been due to write college exams later this particular month and had been preparing hard. The girl was determined to obtain top marks in each subject, her dad says.
A day right after her death, he says, he teared up when he saw a Post-it note stuck on the walls behind her study table with an stimulating message to himself – “You can perform! “.
“It reminded me just how much associated with her is in every part of this house. inch
