Abandoned because of a rare genetic disorder, Nisha Lobo’s story puts the spotlight on adopting differently abled children

Abandoned because of a rare genetic disorder, Nisha Lobo's story puts the spotlight on adopting differently abled children

Aloma and David Lobo, parents to five children already, adopted Nisha who was suffering from a rare genetic skin problem as an infant. Today, the teenage Nisha stands as an inspiration in her own right, strengthened by her parent's affection, which has brought the spotlight on adopting children with health problems.

Aloma and David first laid eyes on Nisha during a chance visit to an adoption centre 18 years ago. Wrapped in a white sheet, the two-week-old girl was unlike any newborn the couple had seen. The skin on her tiny body appeared dry and scaly and she had no eyelids due to a rare genetic condition called Icthyosis.

Chandy, the supervisor of the centre, told the couple that the baby’s eyes were ulcerated and that doctors estimated she had only 15 percent vision.

The Lobos, who had already adopted two of their five children, decided to bring Nisha home.

“Sometimes, while making decisions, you know your heart is there, but you have to make decision with your mind too. We spoke with the family, including the children,” Aloma says.

“Our three boys were in their early 20s and the youngest was about 12. Back then, we were allowed to bring home kids from pre-adoptive foster cares who needed urgent attention. As a doctor and having worked in the adoption sector for years, I understood Nisha’s urgent need,” Aloma says.

On most days, Nisha was fed with an ink dropper or spoon because her mouth was always wide open. With constant care and help from the family, Aloma nurtured Nisha.

“My husband is a very active, hands-on dad and it was a combined effort. During the day she would be fine, but at nights she would cry. She had no sweat glands and she did not have eyelids, so she could not close her eyes. She would sleep with her eyes open. But what was amazing was this child’s will to survive.”

According to UNICEF’s State of World’s Children report 2016, and Central Adoption Resource Authority, India, of the 29.6 million orphans in India, only 42 children with disabilities have found a home.

For the Lobos, adoption was a way of helping abandoned or orphaned children. It helped that both of them came grew up with many siblings.

“We can’t tell you why we adopted three children, because it’s difficult for us to answer that. It just felt right. The more the children you have, the love only multiplied. It is a state of mind.”

Finding a home 

The Lobos received little support or understanding from anyone beyond family and close friends when they decided to adopt Nisha. Aloma recalls the time when she took Nisha to a paediatrician. He asked her: “Why do you want to adopt this child?” Aloma looked into his eyes and asked him, “You tell me why I shouldn’t,” and the doctor told her about her task being a life-long ‘problem.’

“If you consider it as a problem then it is a problem. I was very upset and walked off and I never went and saw him again. People look at these children as a burden, but it’s all in your mind of how you see the child,” Aloma says.

Nisha needed eye drops five times a day and her skin had to be moisturised every now and then. Apart from that, raising her was similar to raising my other children, Aloma adds.

When she was four, Nisha underwent ocular plastic surgery in London to create an extension for her eyelids. The doctors used skin from her arms and made her eyelids.

Social challenges 

Though Nisha was showered with love and affection from her family, the world outside was not as welcoming and supportive. Admission to a school was a major challenge with one institution unwilling to take her on board after looking at her picture.

“When we went back after two days, they said we can’t admit her. We told them her condition was not contagious, she is a lovely child. Their reply was that as parents, we looked at her that way but the teachers, other parents and students might not.”

Nisha eventually joined a school run by Aloma’s friend before she was admitted to Bengaluru-based Trio World Academy.

“I took her to school one day and not many people touched her at the first meeting. But one gentleman held her hand and took her to the class. As he had already spoken to the kids, the moment she met them, all the kids came running to her, called her by her name, asked her about her skin and said, 'don’t worry you come to our school'. She was eight. This is what we were looking for - the touch of care,” says Aloma.

Nisha is now a confident 18-year-old who is interning at a digital marketing company. She is a voracious reader.

In the spotlight

Nisha’s story came into the spotlight when she was featured in an advertisement by Procter & Gamble’s product Vicks. Titled “touch of care,” the video captures the joy of adoption.

“I don't like being dependent on anybody for anything. I don’t like taking help from others so it is the other way round, I don’t mind helping other people. I want this video to help others, Nisha says.

“Through this, I want to tell others not to let anyone affect you with their version of reality. I would encourage more people to adopt if they have the right resources and mindset for it. I hope the result of the campaign is positive,” says Nisha.

“If a child like Nisha has no complaints, then all our problems feel small,” says Aloma.