If the government cannot help us save our children, at least give us the right to end our pain through euthanasia.” This desperate message, addressed to Chief Minister Devendra Fadnavis, was written a week ago by Mahadu Belkar, the father of 15-year-old Tanesh Belkar, one of the 67 children across the state suffering from subacute sclerosing panencephalitis (SSPE), a rare progressive neurological disorder. In his letter, Belkar highlighted the unbearable agony, as a parent, of having to watch helplessly as one’s child suffers endlessly and the abject hopelessness in the absence of support from either the state or Central government.
“We do not wish to see our children suffer every single minute of the day. They are in pain, unable to move or speak, while we, as parents, are forced to watch them die slowly. If the government cannot help us save them, then at least give us the right to end our pain through euthanasia,” Mahadu Belkar’s letter to Fadnavis reads.
Apart from the words of sympathy from a few officials, he hasn’t received a response.
Despite being declared preventable with proper immunisation against measles, the treatment options for SSPE remain limited, expensive, and mostly palliative. This has plunged several families into emotional and financial distress.
“Everyone has turned deaf. Whenever we approach the authorities, they tell us they are trying to get SSPE included on the list of rare diseases. So far, no progress has been made in this regard,” said Belkar.
“Our children are dying, but no one seems to care. All officials seem to be busy in their own worlds and have left us to rot. A few days ago, seven-year-old Ovi Puri died of SSPE. Her parents had spent over R30 lakh, but still could not save her,” he added.
Meenabai Mangilal Jain, the mother of 22-year-old SSPE patient Ritik Jain, passed away on June 23. Her husband, Mangilal Hukamichand Jain, told mid-day, “Our son has been suffering from this disease since 2020. The stress of seeing her son’s health deteriorating daily, and that no one was helping us, claimed my wife’s life. Now, I am left alone with two children, one of whom is suffering from a terminal disease. I don’t know how I should take care of them alone, and that too without many financial resources. It feels like it’s better to die than to keep living like this.”
‘We need a cure’
Two of the major grievances shared by parents are the delay in including SSPE on the national list of rare diseases and the alleged laid-back attitude towards conducting research to develop a cure.
Pradeep Patil, who lost his nine-year-old daughter to SSPE last year, said, “We do not want any money. We just want the spread of this disease to stop. They should speed up the research process. It’s high time that medicine was developed for SSPE because individuals from every age group are getting this disease. We are seeing children as young as six months old and 24-year-olds being diagnosed with SSPE. The numbers are increasing rapidly. Last month, the father of a patient from Chandrapur committed suicide, leaving his ailing son and wife alone to fend for themselves. Will the government take measures only after thousands of children and their parents die?”
Expert speak
A neurologist attached to a private hospital in Mumbai said, “The causes of SSPE are not known, which makes it difficult to develop medication for it. Also, it`s not attacking a specific age group. It`s affecting minors as well as adults. If parents mention that their children were vaccinated against measles, that makes things even more complicated, as researchers need to find out more about what`s causing SSPE despite the vaccination. Thus, it is bound to take years of research before we have medicine, which is the case with almost all major diseases and illnesses.”
Authorities respond
Stating that the state is trying its best to help the patients and their parents, Prakash Abitkar, minister of public health and family welfare, said, “Children can be treated once we have medication. But unfortunately, since that has not been achieved by any country so far, it’s getting difficult to treat these patients. However, all researchers in the health department are working towards developing the medicine. We understand the pain that the parents are going through. And so, the chief minister has directed us to use funds from the chief minister’s relief fund to help the parents of SSPE patients. We have already submitted the paperwork to the Centre, requesting them to include this disease in the list of rare diseases. But till then, I request the parents not to panic. Rather, they should cooperate with us and take care of their children.”
Calls to the chief minister’s office on Wednesday went unanswered.
