They are discussing the civil service exams. She is on her new automatic power wheelchair, and he is holding onto his walker. Both have just written the prelims at the LBS School of Technology in Thiruvananthapuram, coming all the way from Kottayam for it. Latheesha Ansari and Shehin S found the exams alright – easier compared to last year’s question paper. It is Latheesha’s first and Shehin’s third attempt at UPSC.
Born with brittle bone disease
Latheesha’s story was out in the papers a few days ago, when the young woman, who was born with brittle bone disease – also known as Osteogenesis Imperfecta (OI), a rare genetic disorder – suffered from pulmonary hypertension and asked the government for a portable oxygen concentrator to travel with.
“The new condition makes it necessary for her to have a steady supply of oxygen – she can’t eat without it or talk without it. We had requested the authorities – including the Kottayam Collector – for a portable concentrator. But the tender process had not begun on time and by the time the authorities brought the equipment to the exam venue, Latheesha was already inside, writing her exam. We carried our oxygen cylinder all the way,” informs her father Ansari.
It is nearly time for her to eat which means she would need her oxygen supply soon. “It is actually getting better now, after a year,” says a smiling Latheesha, one hand on her mobile phone. She shows the phone gallery which has pictures of her glass paintings, and a video of her playing the keyboard.
“It is an interest that began when I was in class 4,” she says. Latheesha would often appear in television programmes for music shows, and gift her little glass paintings to musicians. She’d once performed on her keyboard for former Chief Minister Oommen Chandy, Ansari says proudly.
Her parents, who encouraged all her skills, were dejected when a school they approached refused to admit Latheesha in the first grade, saying they can’t take children like her. “We took her to another school then. Two years later, the school that had rejected her, called her back and from her third grade to her 12th, she went to the St Thomas school in Erumeli,” says Latheesha’s mother.
After school, she went to the MES College for her Bachelors and Masters in Commerce. “I have been preparing for civil services for three years, taking distance education from the Pala St Thomas College,” she says.
She has always gone to attend class in her school and college before that, her father says. “I would lift her and take her to class. Two months ago, a doctor from Canada gifted this wheelchair that’s worth Rs 1,60,000.”
Latheesha had worked in a bank for three months but that’s when she got a cold and the infection worsened. “We figure that’s how she developed the pulmonary hypertension,” her mother says.
Some of Latheesha's glass paintings
Even through all that, she continued with her interests – preparing for civil services, playing the keyboard (‘for a week now, I haven’t touched it, because of the exam!’), painting, and even occasionally taking classes through phone and the internet for children with disabilities, who find it hard to get out of their homes. She is an active member of Amrithavarshini, a charitable society that works for people with brittle bone disease.
Born with delayed motor milestones
Shehin, who had to leave for Kottayam soon, says he was born with delayed motor milestones – a condition when a child does not develop motor skills at the expected age. He couldn’t walk. He also developed rheumatic arthritis. “It’s been my dream to clear the civil service exams ever since I was in class XII,” he says. After school, he took his Bachelors and Masters in Political Science from the Pala St Thomas College.
Shehin also loves cricket and does commentary for intercollegiate matches and tournaments. “Sourav Ganguly is my favourite cricketer even now.”