40-year-old Smitha Anthony, from Kotayyam in Kerala, a mother of three, has an unprecedented reason to approach the Supreme Court – she wants to seek the top court's permission to allow the mercy killing of her family of five.
"It's our last resort. If the central and state governments do not deliver on their promise of assistance, then we have no hope left and this is our only option," she says.
Their two younger kids, Santrin (9), and Santino (3) suffer from Congenital Adrenal Hyperplasia (CAH), a rare autoimmune disease with no cure.
Santrin also has severe autism. "He’s the first child in India to have both these diseases together. It requires lifelong treatment," says Anthony.
Why Were They Pushed to This Point?
CAH is a group of genetic disorders that present at birth and impact the adrenal glands, disrupting the release of vital hormones like Cortisol, Aldosterone, and Androgen.
Moreover, Salt-wasting Congenital Adrenal Hyperplasia (SWCAH), the kind that both kids have, is the most severe form of CAH. SWCAH makes it difficult for the body to regulate sodium levels in your blood.
"The kids are mainly of steroids which leads to even more issues like fungal infections, constipation, and vomiting," Anthony tells FIT.
According to Anthony, the kids' medical expenses go up to Rs 50,000 per month.
Smitha Anthony and her husband Manu Joseph are currently unemployed nurses – and are caring for their children full-time.
"We have no one else at home to take care of them," she says.
What else have they tried so far?
Government aid for children with rare diseases
Anthony says that CAH was included in the Central Government's list of rare diseases only recently in January 2023, after the family gave a requisition and pushed for it.
Under the National Policy for Rare Diseases 2021 Scheme, people with the listed rare diseases are entitled to up to 50 lakhs in financial aid and treatment at a designated Centre of Excellence (CoE).
Smitha says, "Kerala doesn't have a CoE of this rare disease. The nearest one is in Bengaluru."
She adds that the nearest hospital where they can get treatment is in Thrissur, which is nearly 132 km away from Kottayam.
"Because of one son’s severe autism, we can't take him by train or flight. We have to take him by road, which is a difficult task, not to mention expensive," she says.
"We have all the paperwork, they were processed, but to this day we haven’t got any of it. Not just us but anyone who qualifies is not getting it at the moment."Smitha Anthony
She claims that they approached the high court with the kids' medical records and all the necessary documents but to no avail.
Hunt for a viable job
She alleged that they had approached their panchayat for a job near where they lived so that they could stay close to their kids during working hours.
Despite the panchayat members agreeing to do so, she alleges that the request has been stuck as the necessary paperwork has not been sent to the state government yet.
"We sold the land we had and all my jewellery. That’s how we have been managing so far," Anthony tells FIT, adding, "We have taken a loan too, with no means to repay it."
Child protection services
Anthony claims that the District Child Protection Unit from Kotayam had visited the couple saying they would take custody of the children if the couple was incapable of caring for them.
"They said we’ll have to hand over our kids to them. How can I give my children away like that?" she says, adding, "If they can help us provide for, and protect our kids, that's what we want."
'We Just Want the Assistance We Are Owed'
To be clear, the couple have not yet filed the petition in the Supreme Court.
"This is a last resort for us. The reason we made this decision is because every other attempt of ours before didn't yield anything. What we are looking for is a viable solution to our problem."Smitha Anthony
"All we want is the assistance we were promised to treat and protect our kids," she adds.
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