UDUPI: After a family from Kerala raised Rs 18 crore through crowdfunding in one week for the treatment of their child who is suffering from spinal muscular atrophy (SMA), the father of a five-month-old baby in Udupi is seeking similar financial support for his son who is also suffering from the same disease.
Sandeep D, 34, an electrician from Belman village, said his son Mithansh S Devadiga is suffering from SMA Type - 1 from birth as per the tests conducted by the Department of Medical Genetics, KMC, Manipal, on July 12.
"We may require at least Rs 16 crore for his treatment at Hinduja Hospital in Mumbai. Doctors suggested we try crowdfunding. I am without a job due to Covid-19. My wife Ranjitha is a housewife," Sandeep told TOI.
He has already raised a crowdfunding request through Milaap and ImpactGuru, online crowdfunding platforms. Presently, the child is admitted to Koosamma Shambhu Shetty Memorial Haji Abdullah Mother & Child Hospital (govt hospital) in Udupi.
Mithansh, who was born on February 27, was hospitalised on Saturday after he developed breathing problems.
The parents initially became suspicious about Mithansh's health after they found him lacking limb movements. "Initially, we took him to an Ayurveda physician, and we found improvement in the child's health. Later, when he developed breathing difficulties, we took him to KMC Manipal, where he was diagnosed with SMA – Type 1," he added.
Dr Sweta Shanhag, consultant pediatrician at the government hospital, has certified that Mithansh has undergone genetic testing (MLPA) which showed SMA – Type 1. "The child is having delayed milestones, frequent episodes of difficulty in feeding and respiratory distress. Parents have been counselled to approach higher centres, where such cases are being managed (Baptist Hospital, Bengaluru or Hinduja Hospital, Mumbai). The child is required to be treated with Zolgensma, which is estimated to cost around Rs 16 – 18 crore," Dr Sweta said.
What is SMA: SMA is is a progressive neuromuscular disease caused by the loss of nerve cells, which carry electrical signals from the brain to muscles. The protein needed for this signalling is coded by a gene, SMN 1, for which everyone has two copies — one from the mother and the other from the father. A child develops SMA only if both the copies are faulty. Without the treatment, this disease is fatal. Zolgensma, the world's most expensive drug, is the single-dose intravenous injection of gene therapy, in which the defective SMN1 gene is replaced through adenoviral vector.
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