Society never had the courage to accept Nisha because of her rare genetic disease.
Rather than applauding her courage to bear her suffering with a smile, society only abandoned, rejected and punished her for something that wasn’t in her hands.
Even her own parents couldn’t see any beauty in her and hence, left the newborn all alone to fight the battle for survival.
But, destiny had different plans for this brave soul.
When she was only two weeks old, she met Dr. Aloma and David Lobo – the special souls, who were the first ones to see the beauty in this newborn.
When Aloma and David Lobo saw the baby girl for the first time, they realized that she was born with a rare genetic condition – ichthyosis.
It is so rare that it affects one in a million children. The baby had thickened and flaky skin. As she was born without eyelids, her eyes stayed wide open 24×7 leading to injuries and bleeding. She was also visually-impaired in one eye. And, because of her condition, she could hardly drink anything from her mouth.
Though Nisha’s challenges scared many, they couldn’t intimidate Aloma and David.
And, hence, over three decades ago, when adoption was hardly known, the Bengaluru couple made a courageous decision to adopt Nisha and raise her along with their three biological kids.
But, it wasn’t only Aloma and David, who were in love with Nisha. It was their kids too. Aloma shared with The Better India, how her second daughter looked at the baby and said,
“Mumma, we have to take her home.”
As Nisha became an inseparable part of the Lobo family, the couple took her home as adoption proceedings initiated.
Though Nisha found love and home in Lobo family, her struggle for social acceptance is a life-long endeavor.
When Aloma decided to enroll Nisha in a kindergarten school, the person-in-charge said,
“Madam, you understand her condition, but how do you expect my teachers to take care of a child like this?
But this wasn’t the only time when Aloma saw her little girl being humiliated or rejected by our society.
Not being invited to birthday parties and being treated as untouchable by some parents, who wouldn’t let their kids anywhere near Nisha, Aloma faced many challenges for her baby.
But she made sure that society could never break her young and courageous daughter.
Though society mistreated Nisha at every step, still they couldn’t take away her spirit away. She has grown into a confident girl who has a big heart and ability to forgive people for their ignorance.
But, there have been some moments when Aloma found it difficult to control her emotions when her beautiful girl was mistreated. While recalling one such moment, she shared:
“I get upset. As a mother, I am constantly worrying if she is getting hurt. I remember how a man threw up a ruckus on a flight from San Francisco.
He pointed out to Nisha and told the stewardess, ‘She has to get down, she cannot be on this flight.’ I was so angry I wanted to punch him. But I didn’t.
Nisha told me, ‘Mother sit down. Don’t bother. Let him be.’ The other flyers were quick to react to his behaviour and said that he could get off if he liked but Nisha wouldn’t. It was the day I realised I shouldn’t react, but respond to such behaviors.”
It is so disheartening to see how our society has treated Nisha and her family.
It is high time that our society learns to admire the courage of families raising kids with genetic disorders, rather than blaming parents or their bad karma for it.
We celebrate Nisha and her mother’s courage for showing the society that people with special needs deserves a good life and equal opportunities like everybody else.
Hopefully, after reading their brave and story, more and more people will not only accept but also respect people with special needs!