Listening to Nisha’s story will make us more confident in life, ourselves and appreciate healthy appearance.
When the heart speaks
When she was two weeks old, her biological parents abandoned her in an orphanage in Bengaluru, Karnataka state, southern India. No one wanted to adopt Nisha, but life suddenly smiled at her.
During a random visit to an orphanage 18 years ago, despite not knowing much about ichthyosis, Dr. Aloma Lobo and her husband decided to adopt Nisha.
At the time, the two-week-old baby girl Nisha was swaddled in a white sheet and was unlike any other baby the Aloma and his wife had ever known. The skin on Nisha’s tiny body was dry like fish scales, constantly peeling, and had no eyelids.
The orphanage manager told the couple that Nisha’s eyes were ulcerated and doctors estimated she had only 15% vision. Plaque ichthyosis is a rare skin disease affecting 1 in 600,000 people. It causes the process of shedding dead cells to not take place normally, forming scales on the skin.
Adopting more Nisha with Mrs. Aloma is not easy as she has 3 step sons and 2 adopted daughters. Taking care of Nisha is a series of hard days. Every day, Nisha is fed with a tube or spoon because her mouth is always wide open.
Recalling the early days, Aloma said when she still thought it was a miracle that Nisha survived: “She was fine during the day, but at night she cried. She had no sweat glands and no eyelids, so she had no eyelids, so she was fine. she can’t close her eyes. She sleeps with her eyes wide open .”
Nisha needs eye drops five times a day and her skin must be moisturized at all times.
Your Story page said that when she was 4 years old, Nisha had surgery to enlarge her eyelids with the skin on her arm in London – England. To Aloma, Nisha “is a beautiful girl born from a cocoon, peacefully blooming”.
Family is like that, but the outside world is still scary to Nisha. Aloma remembers when Nisha was 4 years old, a woman spat on her. Aloma gets angry but Nisha says “that’s their attitude, not mine”. Everyone stared at Nisha, pulled their child away when they saw her figure, stood up when she sat next to her.
There was once a man who refused to board a plane because of Nisha. However, at that time everyone present on the flight sided with her. “I look like this, but I’m a good person,” is what Nisha often tells people, Aloma told The New Indian Express.
Going to school wasn’t easy due to Nisha’s looks. The response of the schools will always be a shake of the head.
“They replied that they couldn’t accept her, even though we told her her condition was not contagious. She was a lovely child. They replied that we saw her through the eyes of her parents. , while teachers, parents, students do not,” – Ms. Aloma said. Nisha ends up going to school at Aloma’s friend’s school.
Mrs. Aloma remembers the first day of school, “nobody dared to touch her. There was a gentleman who took Nisha’s hand and led her to class. After he talked to the other children, they rushed to Nisha. asking questions, calling her name and comforting her “don’t worry about going to school”. Warmth spreads and that’s what the Lobo family looks for for Nisha.
Now Nisha is a confident teenager, interning at digital marketing agency Autumn Worldwide. “They warmly accept and guide her. Nisha has always been a warrior with high self-esteem” – Mrs. Aloma is still worried about the safety of her children when she and her husband are getting closer and closer to heaven and earth.
Nisha’s story caught the attention of many when she participated in the “Touch of care” advertising campaign of the P&G brand Vicks in 2018, telling the story of struggling with a severe illness, with the message people have changed the lives of others through the way they care. “We have to make the world around us more connected, break stereotypes and reduce stigma,” she hopes.
