Parents race against time to raise Rs 16 crore to save daughter

Coimbatore: Kumarapalayam-based textile businessman K Satheesh Kumar and his wife V Priyadarshini are raising funds for their daughter Mithra, aged one year and eleven months, who was diagnosed with early stage of spinal muscular atrophy three weeks ago.

The couple are working towards raising Rs 16 crore through crowd funding platforms to procure gene therapy drug Zolgensma. The drug needs to be procured and administered before the baby turns two, which is on July 6, giving the couple hardly 10 days more.

It was five months ago that Kumar and Priyadarshini figured out something was wrong with the way Mithra was walking. They realized that her whole body shook when she took even a few steps. She kept falling when she tried to walk. The child also did not crawl, but could eventually stand.

The parents decided to take the opinion of doctors in Coimbatore. “Once they confirmed her bones and nerves were alright, the doctors suspected that she had initial stage or mild form spinal muscular atrophy and took a blood sample, which they sent to Centogene laboratory on May 5. On June 5, we got a confirmation that she had an initial stage of spinal muscular dystrophy,” Kumar told TOI.

Though Mithra, who is admitted in KMCH, has only an initial stage of spinal muscular atrophy, characterized by weakness and wasting in muscles, doctors fear that if left untreated, it could progress. The disorder, which leads to a loss of specialized nerve cells, called motor neurons that control muscle movement, may eventually affect her ability to breathe on her own. The only treatment option available is gene therapy — specifically a drug called Zolgensma. However, the drug, which costs Rs 16 crore, has to be administered before she turns 24 months.

The late diagnosis had left the parents with exactly a month since diagnosis. “We have raised Rs 7 crore so far, but urgently require another Rs 9 crore,” said Kumar.

On Thursday, chairman of Bannari Amman Groups donated Rs 10 lakh. People interested in contributing can do so through ketto.or, impactguru or the Care and Welfare Foundation in Chennai.