Baby Mithraa flashes a toothless smile at the camera, sitting on her mother’s lap inside a temple in Namakkal, Tamil Nadu. In all the photos shared with TNM, Mithraa and her parents Satheesh Kumar and Priya Dharshini are a happy, smiling family. But a month ago, their happiness was cut short when Mithraa was diagnosed with spinal muscular atrophy or SMA, a rare genetic disorder that gives the toddler just months to live. Since then, Satheesh and Priya Dharshini are spending every waking minute of their lives trying to save their child. But it is not easy, as the drug used to treat Mithraa’s condition costs more than Rs 16 crore. The couple has now turned to the internet to try and crowdfund this sum, even as they race against time to treat Mithraa, who turns two on July 5.
“When she was just 15 months old, we noticed that she had trouble walking. She would keep falling and absolutely could not climb up stairs without support. This kept worsening and she couldn’t pick things up if she dropped them or even get up after sitting down,” says Priya Dharshini. Initially, the couple suspected that Mithraa was suffering from a bone disease and consulted doctors at Coimbatore’s Ganga Hospital. However, when her test results ruled this out, doctors at KG Hospital, another institution they consulted, suggested that Mithraa get a genetic test done.
Baby Mithraa with her mother Priya Dharshini
“They told us to get Centogene’s genetic testing done. Centogene is a German company which specialises in genetic diagnostics for rare diseases. They came home and took Mithraa’s blood test in May. A month later, on June 4, we got the genetic test results which confirmed that Mithraa was suffering from Type 2 SMA,” Priya Dharshini explained.
“Children suffering from SMA become weak. They have difficulty in walking and gradually lifting up their hands and it can progress to difficulty in breathing and swallowing ,” said Dr Anne Mathews, a paediatric neurologist and neuromuscular specialist at the Bangalore Baptist Hospital. Dr Anne, who is involved with Mithraa’s treatment, explained that spinal muscular atrophy is a progressive disease, which means that it can worsen if left untreated and significantly reduce the child’s life span.
However, there is a cure for SMA, in the form of Zolgensma or gene therapy, a medicine made by Novartis. The drug, which is given as a single dose injection, is only produced in the USA and European countries and is among the most expensive treatments in the world. It costs 2.1 million dollars or Rs 16 crore, excluding GST and import duties.
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“Worldwide, at least 1,000 children have received gene therapy treatment and invariably all of them are reported to be doing well. At this hospital, we have had eight children who have received the treatment and they are doing well. But this medicine is unaffordable to many people. We have had children who could not get this medicine and have lost their lives,” Dr Anne said.
Ideally, the drug should be administered before the child turns two years old, in order to prevent permanent damage to muscles. Mithraa turns two on July 5 and her parents are now racing against time to raise Rs 16 crore and buy the medicine before her birthday. “Right now with the pandemic, people find it very difficult to contribute money due to loss of jobs etc. So we are trying a Rs 10 campaign where we appeal to people to contribute Rs 10. We have so far managed to raise Rs 10 and 1 lakh crore but we need nearly six more crores to go,” said Sindhu Raam, a Chennai-based lawyer and founder of Care and Welfare Foundation, which has set up the crowd funding campaign.
Baby Mithraa with her father Satheesh Kumar K
“Celebrities including Kollywood director Vignesh Shivan, cricketer Harbajan Singh and Shruti Haasan had shared Mithraa’s crowdfunding page. But we are short of money despite the publicity,” Sindhu pointed.
As they have only a few days left, the family has arranged with Novartis to get the drug delivered within four days. “Generally it takes 13-30 days for the medicine to be delivered. But they said they would speed up the process as Mithraa will turn two in three days,” Priya Dharshini added.
Even if they are unable to raise Rs 16 crore by July 5, the couple plans to keep the crowdfunding page live and collect the amount. “Even if we are delayed by a month or two, we just need to collect enough money to get the medicine to treat her. In February, Ayaansh, a three-year-old in Hyderabad too received the medicine after crowdfunding,” she says.
UPI handle - careandwelfare@okhdfcbank
Pay via GooglePay / PhonePe / UPI using this number - 7094033399
NEFT / IMPS / RTGS
Care and Welfare Foundation
HDFC Bank
A/c No: 50200031102755
IFSC Code: HDFC0009202
Donations are exempted from tax.