No intention of holding on, finding house catering to daughter’s special needs a challenge: Former CJI Chandrachud

In his response, Justice Chandrachud spoke about the challenges in finding suitable accommodation for his daughters who have special needs and said that he was aware of his public responsibilities. He said he had no intention to hold on to the government accommodation.

In the interview, the former CJI spoke about his daughters Priyanka and Mahi and how their condition requires round-the-clock attention and a home tailored to their convenience.

"Priyanka and Mahi have a rare genetic disorder called nemaline myopathy which affects the skeletal muscles. This disorder has no treatment or cure anywhere in the world presently, though research is going on in India and abroad," he told NDTV.

Justice Chandrachud explained their condition and said, “Nemaline myopathy causes degeneration of the muscles and motor skills. It severely affects the respiratory system, causes severe scoliosis and issues relating to swallowing, breathing and speech and compromises all organs."

To live with the condition, Priyanka and Mahi need a variety of exercises every day, ranging from respiratory to neurological to occupational therapy and pain management, he said.

"This home, including bathrooms, has been modified for their condition," Justice Chandrachud highlighted, suggesting moving into another house may not be that easy.

Justice Chandrachud had pointed out the government had allotted him temporary accommodation on rent but that house was lying unused for two years. The house is undergoing renovation. He said most of his belongings are packed and he is ready to move once the house is renovated.

Amid the controversy surrounding his overstay at a government accommodation, he said he tried everything to get an alternative home as soon as possible and kept the Supreme Court administration updated about his attempts.

He also has said he considered getting a house on rent in the meantime but experienced getting one for such a short duration.

He elaborated his daughter's conditions in detail and said, "Care has to be taken that they do not suffer from fatigue as it deteriorates the muscles further. For them to have a dignified life, a multi-disciplinary team of healthcare professionals, including pulmonologists, ICU specialists, neurologists, respiratory therapists, occupational therapists, physical therapists, speech therapists and counsellors work together on a daily or weekly basis."

Talking about Priyanka, he said she has been on respiratory support since December 2021 and has a tracheostomy tube connected to a BiPAP machine.

“She was ventilated three times at the age of thirteen at PGI Chandigarh. The tube has to be changed several times a month and sometimes, a couple of times a week. An ICU setting has been created at home,” he shared, adding, “Priyanka is susceptible to infections and has to be protected against dust, allergies and infections.”

Justice Chandrachud spoke about his wife Kalpana and said she has tried to establish contacts with specialists, scientists and caregivers worldwide and is actively following the current research in an effort to find a cure.

He said, "For us parents, the world revolves around their well-being…As parents, we avoid travelling together without the children. As parents, we try to make their lives meaningful, fun and create an atmosphere where they lead a fulfilling life.”

The former CJI said they encouraged their daughters to pursue music and art and that they are very good at chess, however, they could not continue their education at the Sanskriti School in Delhi. So they continue to have home-schooling.

“Every aspect of their day-to-day activities is carefully looked after by Kalpana. We do not socialise and prefer to spend free time at home with the children," he said. Justice Chandrachud also has two sons who are both lawyers, Abhinav and Chintan Chandrachud.