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“I like noodles more than rice! I can speak a few words and I play alone with my toys”

 
A marriage was arranged between Sulekha Kumari, who had passed her 11th standard, and Viki Sahu, who had passed 12th and had started working. They were married in 2018 and their daughter Manvi was born a year later; it was a normal delivery in the GB Pant government hospital in the Andamans.  “She had blue eyes and everyone was admiring them,” Sulekha (26) recalls. “We had no idea she had a problem.”
 
When the couple took the infant to a private hospital to treat her for diarrhoea, they were shocked when the doctors said she had blindness! They got her thoroughly checked at a government hospital when she was four months old, and the diagnosis was confirmed. They were thoroughly disheartened: as Sulekha puts it, “How unlucky is a child who cannot even see her own parents!” But they found it hard to believe because she was able to correctly spot and grasp objects, although they did notice her constant eye movement and shifting gaze.
 
The doubt about her vision lingered in their minds for years. When Manvi was four they took her to a private hospital which referred them to Arvind Eye Hospital in Chennai. They came to know that while one of her eyes had zero vision, the other had retained 10 per cent. “We could have saved her eye if you’d brought her earlier,” said the doctors, adding that they could still operate on her eye – but at a huge risk. Because Manvi had started experiencing frequent seizures (fits), and an attack during the operation would be disastrous.
 
Manvi’s growth had been slow, with delayed developmental milestones. She was almost two when she had her first brain seizure, throwing her parents into a panic. The episodes would occur every month or so. After being diagnosed with Cerebral Palsy (CP) at age three she was put on medication. She hasn’t had a seizure for the past two years; her parents take her every month to the government hospital for her medicine. The hospital also referred the parents to an appropriate school for her.
 
Manvi has been attending the Composite Regional Centre (CRC) in Brookshabad. The Ministry of Social Justice and Empowerment has set up CRCs in many states for the skill development, rehabilitation and employment of Persons with Disabilities (PwD). The school is just a 15-minute walk away. Viki (28) is a contract worker in the municipality, managing the water supply, and since he works in shifts he keeps odd hours and cannot help Sulekha as often as he would like to. If he happens to be free at the right time he takes Manvi to, or fetches her from, the centre. It is usually Sulekha who takes there at around 10.30 a.m. and remains there till she finishes classes at noon.
 
Once they get back home, Sulekha usually feeds Manvi since her fine motor skills are weak, but sometimes she tries getting her to eat by herself, and Manvi manages the best she can. “She likes Maggi noodles and chips and not our normal food like rice and dal,” says Sulekha. Manvi sleeps till 2 p.m. and plays with her toys while her mother does her household work and cooks dinner. Her mother-in-law Mini Devi (49) lives with them.
 
Manvi has shown improvement with the physiotherapy and speech therapy the CRC provides. “Earlier she could only sit in one place, and for everything she needed support, but she is much better now,” says Sulekha. “She is able to sit and stand without support for a few minutes. She is also able to speak a few words like ‘ma’, ‘papa’ and ‘aa-ja’ (come here).”
 
Despite the benefit from the therapies, Sulekha is unable to let go of the yearning for a ‘cure’. For the past two months she has been taking Manvi to a Kali temple. It has a priest who officiates, and a man who lives on the premises and gives massages for free. “I’ve heard that anyone who goes there gets cured,” says Sulekha. “I have met people who say their ailments were cured by praying at that temple.” She takes Manvi there by bus at 5 p.m. and returns home by 8 p.m.
 
Sulekha told us, “I believe that my child will be cured one day. I want her to be independent and stand on her own feet, get a good education and lead a happy life.”