TheNFAPost Podcast

Kozhikode, NFAPost: It is a momentous day for PK Rafeek and Mariyumma, the parents of one-and-a-half-year-old Muhammad who wanted to get financial help to treat his spinal muscular atrophy (SMA) disease. With a week, social media led approach to find the fund found its culmination as netizens showered their financial support to rake in Rs 18 crore.

The money which they wanted to treat their son was unthinkable to them as a single dose of Zolgensma, a drug labelled as the most expensive in the world. Novartis Gene Therapies is the drug most effective for the treatment of SMA in patients less than two years old.

The fundraising initiative got momentum after a committee was formed with Kannur district resident Mohamad’s family and local and MLA and MP. The chairperson of the committee was the local panchayat president. The video message seeking help was made by the patient’s sister and circulated via Facebook and WatsApp.

Muhammad’s family really overwhelmed by the overwhelming response from people across the world as they succeeded in amassing Rs 18 crore in less than a week time. The bank, where they started the account, also informed them that the account crossed the target of Rs 18 crores. Besides the Malayali expatriate community, especially from the Gulf region, Indians as a whole played a key role in the fundraising.

“Alhamdulilah, alhamdulilah, 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 anymore,” said Rafeek. Rafeek’s daughter Afra, 15, also suffers from SMA and has to use a wheelchair to move about.

Farisha K, president of the Mattool panchayat, told the channel, “I want to tell all the good-hearted people across the world, that they got the help people sent them. Our target has been reached so please don’t send any more money into that bank account,” said Farisha K.

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