- 16-year-old Afra Rafeeq died last week from spinal muscular atrophy (SMA). SMA is a potentially fatal disease that affects one in 6,000 to 10,000 kids.
- Her family raised millions of rupees for the care of her younger brother through a video appeal.
- Her father claims she was driven to excel in all her studies and helped spread awareness of SMA.
A social media sensation from India who passed away last week raised millions of rupees for the care of her young brother through a video appeal.
Spinal muscular atrophy (SMA), a rare hereditary disorder that causes muscle weakness and impairs mobility and respiration, was present in 16-year-old Afra Rafeeq.
After experiencing disease-related problems, she passed away on Monday at a hospital in Kerala, a state in the southern United States.
She enjoyed life to the fullest extent possible, according to her father, PK Rafeeq.
Family members and neighbours of Afra recall her as a gifted young woman who loved to sing and learn despite suffering from great pain.
But in 2021, a trending video helped her gain nationwide popularity.
Her father claims that prior to incident, Afra rarely left her home in Kerala’s Kannur district. She only left the house to go to school or the hospital after receiving her SMA diagnosis at the age of four.
He explains, “We were quite discreet and focused on providing her the appropriate care.
Then, though, Muhammed, her younger brother, was also identified as having SMA.
Because we were aware of the suffering that our daughter had already endured, the family was “devastated,” according to Mr. Rafeeq.
Afra enjoyed spending time with her sister Anzila and brother Muhammad.
SMA is a potentially fatal disease that affects one in 6,000 to 10,000 kids. As a child ages, the problem worsens because it affects the motor neurons, which are spinal cord cells.
Key developmental milestones like holding up their neck, sitting, standing, and walking are difficult for kids with SMA to accomplish.
According to her father, Afra fought tooth and nail to make sure Muhammad received the proper medical care.
This included having access to Zolgensma, a relatively new gene therapy medication that the US FDA authorised in 2019. The medication, which is among the most expensive in the world, contains a copy of the gene that is missing in SMA patients and is administered as a single dosage to children under the age of two.
By the time Muhammad became one and a half years old, his family had little time left. However, according to Mr. Rafeeq, “the expense of the drug was unimaginable.”
Zolgensma had to be imported from the US and cost 180 million rupees ($2.2 million, £1.8 million) for one dose.
For our youngster, gene therapy has changed everything.
The NHS has authorised the “most expensive” medicine for a genetic condition.
Several Indians have used crowdfunding since Zolgensma was approved to obtain the medication, with some of them being successful after their appeals went viral. The health ministry of India has approved voluntary crowdsourcing for some uncommon disorders like SMA.
The family of Afra used a variety of resources, including crowdsourcing websites. In order to raise funds, their town council established a treatment committee. They were only able to raise a few hundred thousand rupees, though.
At that point, Afra assisted by her cousin in filming a video.
She stated in the web video, “I don’t want my brother to go through the suffering I have.”
It soon gained media attention after becoming viral on social media.
YL Ibrahim, a village council member, claims that “all of a sudden, money started coming in from everywhere.”
The fund for Muhammad’s medical care received 467.8 million rupees in just three days. Another public plea to avoid sending money was required by Afra.
According to Mr. Ibrahim, “We tried so many things, but it was her video and what she said that struck a chord with people.”
Following Muhammad’s dosage, the group used the additional monies to assist two additional SMA youngsters and then offered the remaining sum to the Kerala government.
Mr. Rafeeq claims that Afra “saved” the family.
After learning of her brother’s condition, Afra’s family was heartbroken after witnessing the suffering she through.
Afra, who was “overjoyed,” created a YouTube channel to inform viewers of her brother’s advancement. She amassed 259,000 subscribers in less than a year. Her hospital visits, home visits with her brother and sister, and celebrations of holidays and birthdays were all captured on camera in those movies.
In her films, she would also talk in-depth about Muhammad’s medical care and physical rehabilitation.
At the age of two, Muhammad is able to hold himself while standing and can crawl on his own.
“He is still unable to stand or walk by himself. However, his legs are starting to gain some strength “Says Mr. Rafeeq.
But Afra’s situation only became worse. Her parents claim that in the final days of her life, she would clench her teeth in agony and hardly be able to lift her hands.
The family was seen in her most recent video visiting a hospital in the state capital Thiruvananthapuram. Thousands of people have posted condolence messages under the video once it was made public that she had passed away.
According to Mr. Rafeeq, Afra’s films helped spread knowledge of SMA throughout India.
He asserts, “I believe that was her life’s goal.” “Because of her, so many people realised what SMA is and what it does.”
Later this month, Afra would take school tests for which she had been studying diligently. Her father claims she was driven to excel in every subject.
He claims that the day after she passed away, he cried when he noticed a Post-it note with the words “You can do!” written on it affixed to the wall behind her desk.
It brought home to me how much of her is present throughout this entire place.
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