Mithansh, the son of Sandeep D and Ranjitha from Belman in Udupi, was diagnosed with SMA type-1 from birth, in the tests conducted by the department of medical genetics, KMC, Manipal, on July 12. Further, Dr Sweta Shanhag, consultant paediatrician at the Koosamma Shambhu Shetty Memorial Haji Abdulla Mother and Child Hospital, had certified that Mithansh required to be treated with Zolgensma, the only treatment for SMA, that costs around Rs 16-18 crore.
The parents had raised online crowdfunding requests to meet the cost of their son’s treatment, and collected nearly Rs 40 lakh. Though the family spent several lakhs for initial treatment, Mithansh passed away on July 29.
Financial aid for patients
Following the death of Mithansh, his parents decided to use the balance amount to donate an ambulance to social worker Eshwar Malpe, who serves the poor in Udupi, and also help 16 patients suffering from cancer and other diseases through Sathyada Tuluver, an organisation in Udupi and Mangaluru. Praveen Kurkalu, founder, Sathyada Tuluver, told TOI that the organisation will facilitate the distribution programme on Sunday.
“The parents have spent several lakhs of rupees for the diagnosis and initial treatment of the child. Since the child is no more, they have decided to use the remaining funds collected through crowdfunding for social causes. The donations, including an ambulance, will cost around Rs 14 lakh. Out of 16 beneficiaries we selected, three are children suffering from different ailments. Meanwhile, financial aid will be given to a cancer patient, two patients suffering from burns, one suffering from kidney disease and a few others who are in debt due to prolonged treatments received by them. In fact, we have received 50 applications and selected those who are in dire need of financial help,” Praveen said.