Kasaragod: Sreerag Edneer, a 17-year-old boy with a rare genetic liver disorder, died in hospital on Thursday, April 11.

Sreerag's case once again exposes the apathy of the government towards children affected by the aerial spraying of endosulfan in Kasaragod district.

Sreerag and his elder brother Tarun Edneer (18) were diagnosed with Wilson's disease in which excess copper builds up in the body.

Tarun started showing symptoms of the disorder first with swollen feet and abdomen. The government identified him as an endosulfan victim in the Special Medical Camp held in April 2017.

Since then, the government has not conducted special medical camps to identify endosulfan victims of Kasaragod.

Tarun's younger brother Sreerag started showing the same symptoms in 2019. During a test in a private hospital in Ernakulam, Sreerag was also diagnosed with Wilson's disease. However, he was not included in the list of beneficiaries for free-of-cost treatment and compensation.

In March 2019, the Department of Social Justice brought out a government order saying that if two members of a family suffer from the same condition and one of them has been identified as an endosulfan victim, the Collector should initiate steps to include the other member in the list of endosulfan victims.

"Based on the order, I submitted several representations to the Endosulfan Cell to include Sreeraj in the list but there has been no response," said social activist Munisa Ambalathara, who fights for the rights of endosulfan victims.

Minister for Public Works P A Muhammad Riyas is the chairman of the Endosulfan Cell and the District Collector is the Convenor of the Cell, which reviews and implements schemes and projects for victims. The last time the Endosulfan Cell was convened was on January 8, 2023.

Shantha E and husband Sreedharan have been running around to raise money for Sreerag's treatment for years. Shantha works as a helper in a dentist's clinic and Sreedharan is a caretaker of an estate.

The couple has to shell out Rs 4,000 to buy one tablet for a month for Tarun. But his medicines are provided free of cost by the government because he is on the list of beneficiaries.

But in the case of Sreerag, the family had to raise the money for his treatment, said Munisa.

On Wednesday, he fell sick and was taken to a hospital in Mangaluru. He died around 6.10 am on Thursday. Both Sreeraj and Tarun were waiting for their Class 12 results.

"Sorry, son," writer Ambikasuthan Mangad wrote on Facebook in a heartfelt post. "I don't know if anyone will read this post in the election frenzy," he wrote.

Though the government assured the protest committee that it would conduct special medical camps every year to identify endosulfan victims, it has not conducted one for the past seven years, said the writer. "Because of this, several children are dying without being included in the list of beneficiaries and without proper treatment," he said.

Mangad cited the example of Mohammed (20), son of Maimoona and Seethi, a commercial vehicle driver, of Chettumkuzhi in Kasaragod's Madhur grama panchayat.

The couple's two other children Shamna and Hassan were diagnosed with brittle bone condition and had undergone 25 and 16 surgeries respectively.

After dropping out of Class 12, Mohammed worked as a sound system operator and was a big support to his parents. He used to take his siblings to hospitals.

Five months ago, Mohammed contracted a fever and started losing his voice. He was diagnosed with lingual and vocal cord dystonia, characterised by involuntary muscle contractions. After being in the ICUs of two hospitals in Mangaluru, he is sent home. "Now, he is fully bedridden and is fed through a tube," said Maimoona.

Several children in endosulfan-affected families show no sign of illness as minors but fall ill suddenly and die, said Mangad.

With little support from the government, Mangad said Mohammed's family mortgaged everything they owned, including their house, for his treatment. "Long live democracy. After every five years, people will stand in queue like slaves," he wrote, dejected. "Will there ever be an end to the tears of the poor victims of state terror, victims of toxic rain?"