The girl from Mattool in Kannur succumbed to the disease in a private hospital in Kozhikode. She had been under hospital treatment for the past few days after she developed SMA-related complications.
Afra with her younger brother (File photo)
After her brother Mohammed was diagnosed with SMA, a rare disease that weakens muscles, and doctors advised him to receive the Rs 18 crore-a-dose drug Zolgensma before he reached the age of two, wheelchair-bound Afra had sought help. of people raising money in a viral video last June.
“My legs and spine are bent because of the disease. It is even difficult for me to lie down and sleep. But my brother’s situation is not like that now. He crawls on the floor and everything. If he gets this medicine now “He can be saved. I hope if you all come forward with help, he can be saved. He shouldn’t end up like me,” she said in the video.
The appeal touched the hearts of thousands of people who helped raise Rs 46 crore instead of the Rs 18 crore the family had hoped to collect for the drug’s import. As many as 7.7 lakh people had sent money to the two accounts opened by the committee set up for the crowdfunding.
Afra’s long and painful battle with SMA did not prevent her from dreaming big and also from pursuing her talents in singing and drawing.
‘Very talented girl with high ambitions’
Lately, Afra had also done her best to vlog and share video updates about her life, travels and studies as well as updates on her brother’s treatment on her YouTube channel.
“Afra was a very talented girl with high ambitions. She dreamed of becoming a doctor and also wanted to pursue her passion for singing,” said Mattool panchayat president Farisha K.
Afra, daughter of Rafeeque and Mariyumma, was a class X student of Safa English Medium School. The burial took place in the cemeteries of Mattool Central Juma Masjid in the presence of a large number of people.
Mohammed was given the drug on August 24 last year and his physical therapy sessions are ongoing. Of the excess funds raised, the committee has provided funds for the treatment of two other SMA-affected children and handed over the remaining Rs 12 crore to the state government for the treatment of SMA-affected children.