Rare disease of children: Kerala Family plans to move SC seeking assisted death

KOTTAYAM : Smitha Antony and Manu Joseph seem to have hit a brick wall in terms of their physical and emotional agony. The couple from Kozhuvanal, in Kottayam district, are currently contemplating approaching the Supreme Court seeking to permit the mercy killing of all five members of their family. The shocking decision was reached after exhausting all efforts to provide treatment to two of their three children, who suffer from a rare congenital disease.

For Smitha and Manu, life turned into a relentless struggle after their second child, Santrin Joseph, 9, was diagnosed with salt-wasting congenital adrenal hyperplasia (CAH) seven days after birth. Adding to their distress, the couple discovered that their son is also 90% autistic. The agony was further exacerbated when their third child, Santino Joseph, 3, was also diagnosed with CAH.

The couple’s determination and perseverance resulted in a partial victory when the Union ministry of health and family welfare accepted their request and included CAH in the group II category of rare diseases, for which support can be provided by the state government. Additionally, on the High Court’s intervention, the government provided some funding for their treatment. This, however, proved insufficient for the family of five. Both Smitha and Manu, who worked as nurses in New Delhi, were forced to confine their lives to their home to care for their children.

“A CAH patient with severe autism is the rarest of rare cases. To our knowledge, Santrin is the only patient in the country with this condition. Managing this situation is incredibly challenging, as he requires constant and specialized care” said Smitha.

Despite reaching out to the government for assistance in securing employment to sustain their lives and manage their children’s treatment, they have unfortunately not received any support. “We are unable to proceed without employment. We have already sold our properties and even mortgaged our home to secure a bank loan for our children’s medical treatment. The severe financial crisis has also begun to impact the education of our eldest daughter,” said Smitha.

P C Joseph, a retired employee of the health department and a member of Kozhuvanal grama panchayat, has proposed a solution to address their issues. He suggests offering either of them a job at the recently upgraded Family Healthcare Centre (FHC) in Kozhuvanal. “There are currently two staff nurse vacancies at the FHC, which are being filled by the National Health Mission. Securing a job at the FHC would greatly assist the family in overcoming their challenges,” he said.

However, the government, responsible for making a policy decision in this regard, has yet to acknowledge the issue.

Despite Social Justice Minister R Bindu’s assurance of a prompt decision following the conclusion of the Nava Kerala Sadas, the family’s wait seems to be never-ending, leaving them with no choice but to consider the heartbreaking option of assisted death.