Rare disease of children: Family in Kerala to approach apex court seeking mercy killing

Kottayam: A couple here is getting ready to approach the Supreme Court seeking permission for mercy killing of all five members of their family as attempts to continue treatment for their children, suffering from a rare congenital disease, have failed.

Smitha Antony and Manu Joseph, a couple hailing from Kozhuvanal in this district, took the decision as they could not find any way to carry forward the treatment of the two of their three children who were suffering from Salt-Wasting Congenital Adrenal Hyperplasia (SWCAH).

Salt-wasting is the most severe form of CAH, a group of genetic disorders that affect the adrenal glands that produce important hormones. Smitha said though she and her husband were nurses by profession, they could not go for work as both of them needed to be at home for the complete care of their second and third children. While talking to reporters here, she said both Santrin and Santiyo were diagnosed with SWCAH and the elder one was 90 per cent autistic also.

She said they sold and pledged their properties to find means for the treatment expenses and buy medicines for the children.

”We are struggling hard to find means for our daily expenses, for the treatment of the younger children and the education of the eldest child. As there is no income, life cannot be taken forward,” Smitha said.

The woman alleged that though they approached the local panchayat seeking a job and an assistance for treatment, they didn’t provide any support.

Though the panchayat committee had unitedly decided to give her a job some time back, its secretary didn’t send the necessary papers regarding the decision to the government, she further charged.

Despite lodging complaints several times, nothing has happened so far, she said.

Though the secretary later sent the file to the government after the interventions of the Human Rights panel, no decision has been taken with regard to the promised job, the woman explained.

”So, our family has no option now other than requesting mercy killing. We are now contemplating to approach the Supreme Court and the High Court requesting the same,” she added.

Smitha also said that her family was undergoing severe mental trauma.