A week ago, K Rafeek and Mariyumma, residents of the Mattool panchayat in the Kannur district, came forward with a plea to raise 18 cr for the treatment of their one-and-a-half-year-old son Muhammad. Muhammad suffers from spinal muscular atrophy (SMA). SMA is a genetic disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). It is a rare fatal genetic disorder.
K Rafeek and Mariyumma were requesting for the sum to import a single dose of Zolgensma. Novartis Gene Therapies manufactures the Zolgensma drug. The drug is effective in SMA patients less than 2 years old.
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A committee was formed for the cause under the chairpersonship of the local panchayat president with Muhammad’s family and the local MLA as members. A bank account was set up to receive donations. The committee then set out on a massive outreach programme that included media networks, social media influencers, charity workers, and expatriate committees.
Their effort bore fruit within a week. The family was informed that the target amount of 18 cr had been crossed on the following Monday. The Malayali expatriate community in the Gulf played a key role in the fundraiser.
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In an interview given to Asianet news, Rafeek said, “Alhamdulilah! Alhamdulillah! From the bottom of my heart, I want to thank all the people who helped us and prayed for my son. Once he gets the injection, I will come back to thank you again. I’m so happy that I can’t speak!”
Farisha K, president of the Mattool panchayat, said, “I want to tell all the good-hearted people across the world, ‘we have got the help you sent us’. Our target has been reached so please don’t send any more money into that bank account.”
Muhammad’s older sister Arfa, 15 years old, also suffers from SMA. The excess money that has been raised will be used for her treatment.