COIMBATORE: National President of Mahila Morcha and former BJP state secretary Vanathi Sreenivasan wrote to the Prime Minister and tweeted about the plight of an eight-months-old baby from Podanur, who is suffering from spinal muscular atrophy.
She pointed out that the baby needs the drug ‘Zolgensma’ for a chance to survive. The drug costs Rs 16 crore. She requested the Prime Minister to waive off GST and import cost which is 35% of the total cost of the drug.
People, who knew the family, hoped that her tweet and appeal will help in raising funds for the baby’s treatment.
Vanathi Sreenivasan, in her tweet, enclosed a copy of the letter she wrote to the Prime Minister and tagged finance minister Nirmala Sitharaman and health minister Dr Harshvardhan.
She wrote that baby Zuha Zainab’s parents—Abdullah and Ayisha are unable to afford the cost of treatment and have resorted to crowdfunding to save the life of their daughter. Vanathi Sreenivasan said that she also requested the Prime Minister to grant them assistance under PMNRF and help the baby get the drug as early as possible.
Podanur-based businessman -- Abdullah and his wife Ayisha already lost their first son to the same rare genetic disorder in 2018.
Their second child was born in June 2020 and developed the same symptoms.
“She would not be able to move her hands, legs and head. She couldn’t stand too,” Abdullah said.
“When she was two-months-old they suspected the same disorder and went to Royal care Hospital, who after sending her blood tests to Netherlands confirmed that she too had a spinal muscular atrophy,” he added.
“This time, the paediatrician referred us to Bangalore Baptist Hospital, who told us about the drugs. We contacted an NGO and crowdfunding platform to gather the money,” he said.
Abdullah through the platform and other fundraising videos said that he could have managed even if it was a few lakhs, but Rs 16 crore is too big a sum for him or his family to source. The couple can so far collected Rs 1.27 lakh for the baby’s treatment.