CUDDALORE: The parents of a one-and-a-half-year-old boy suffering from Spinal Muscular Atrophy (Type-2) are appealing for government aid and public donations to purchase a Rs 16-crore medication from the United States, which they have been told as the cure for their son's disorder.
P Sivaraj, an electrician from Kamblimedu near Alapakkam in Cuddalore district, lives with his wife S Sivasankari and three children. Among them is S Krithikraj, who has been diagnosed with the genetic disorder. Krithikraj exhibited symptoms when he was eight months old. After being treated at several hospitals, he was diagnosed with the disorder at the Institute of Child Health and Hospital for Children in Egmore, Chennai, a few months ago.
Sivaraj told TNIE that the doctors instructed that the medicine must be administered within four or five months. He said his son's food intake is minimal, turning him underweight, because of which he could not sit or stand. The doctors at a private hospital in Bengaluru informed Sivaraj that the required medication, available only in the US, costs around Rs 16 crore.
Saying her husband is her family's breadwinner, Sivasankari said even Rs 1 lakh is a huge sum, and the thought of raising Rs 16 crore is unimaginable. “Due to our son’s treatment, my husband also could not go to work regularly," she added.
The parents have already petitioned the state government seeking assistance, however, officials have informed them it would be difficult for the government to allocate such a huge sum and suggested crowdfunding.
Considering their advice, the family took to social media to appeal for public donations, through which they have raised nearly Rs 6 lakh so far. "We need to raise more money to save my son’s life. We request the public to support us,” Sivaraj said.
With time running out, the family is hopeful that the chief minister would extend assistance by allocating funds through a special order. The people willing to contribute can contact Sivaraj on 8825642634.