KOCHI: Every dark cloud has a silver lining and blessings do come in different forms. This is something that the parents of 16-month-old Nirvaan, who has been diagnosed with Spinal Muscular Atrophy (SMA), would give testimony to. A good samaritan has appeared as an angel in their time of need and donated $1.4 million (Rs 11.6 crore) towards Nirvaan's treatment.
"Nirvaan needs an injection that costs $2.1 million (Rs 17.5 crore). We have to get the injection called Zolgensma from the US," said Sarang Menon, a native of Athani near Angamaly in Ernakulam district. He said, "I have no words to express my gratitude to the benevolent human being who extends a helping hand in the time of our need."
Sarang had applied for financial aid with Milaap which is a crowdfunding platform. According to him, he has no idea who the good samaritan is. "Apparently, the person had come across our application and wanted to help out. The person only wanted to see Nirvaan getting okay," he said.
Sarang would need only a little more to cover the entire cost of the injection. "I am making enquiries regarding the forex exchange rates in terms of the US dollars. Once that arrives I will have a correct picture of the remaining amount that I have to arrange," said Sarang who had been working as a marine engineer in Adelaide in Australia.
According to him, Nirvaan was diagnosed with SMA on January 7 this year. "Even after turning one, Nirvaan was unable to sit or walk. So we took him to the hospital where he was identified as suffering from Scoliosis due to which his spine had developed a slight curvature," he said. The family was advised to go in for surgery. "So, as a part of the preparations for the surgery many tests were conducted and one was with the neurosurgeon," he added.
It was the neurosurgeon who identified that Nirvaan had SMA. "The doctor said that SMA can also lead to scoliosis and it was due to the disorder Nirvaan was unable to sit upright and do many of the functions that a child of his age should be doing," said Sarang. The family had been living in Australia. But once Nirvaan was diagnosed with SMA, they returned home and began treatment at Hinduja Hospital in Mumbai.
"We are presently in Kerala but will return to Mumbai soon. Before the company sends the injection, we have to conduct many tests. The doctors have been contacting us and we will be leaving in a few days," said Sarang.
"Once the injection, which will be administered intravenously, is given, Nirvaan will be placed in isolation for three months. The recovery might take some time since the bad gene has to be completely removed and replaced with new good ones," said Sarang.