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Thursday, Dec 12, 2019

International Women’s Day: Three sisters who challenge muscular dystrophy

Life may have given them a tough deal, but these three city-based sisters have showed that they are tougher by earning livelihood for their family while fighting muscular dystrophy.

delhi Updated: Mar 08, 2019 12:33 IST
Ruchika Garg
Ruchika Garg
Hindustan Times
Renu, Nitu and Sonia who are muscular dystrophic are earning livelihood for their family.
Renu, Nitu and Sonia who are muscular dystrophic are earning livelihood for their family. (Gokul VS/Hindustan Times)
         

Their eyes sparkle with hope and their smiles exude confidence. But neck below, their bodies are incapable of movement. Yet these women have won against a condition that’s rare to face and rarer to fight. Meet the tutor sisters — Renu, Nitu and Sonia — who are not only changing their own lives but also teaching the next generation to do so. All three suffer from muscular dystrophy, a disease that causes progressive weakness and loss of muscle mass, or in simple words, makes body parts incapable of movement. Yet their spirit is indomitable.

All three were born healthy, but with age faced difficulties walking and managing their body weight. Renu, 43, the oldest, was first to be diagnosed. “I was 15 years old and the first one to deal with this problem. There was no awareness about muscular dystrophy, and even doctors were confused. Some called it a weakness and others gave me tablets for fever. I was in the first year of my graduation when my legs couldn’t bear the weight of my upper body. I was unable to walk and had to halt my education. I went to almost all doctors to find out about the cause of my problem but to no avail,” says Renu. Later when she found out, she also realised there is no cure to it. She says, “With age, the muscles of each body part deteriorate and the condition worsens. By the time I got to know this, I went into depression but I chose not to let myself down.”

The sisters provide tuitions to the kids and manage their own expenses.
The sisters provide tuitions to the kids and manage their own expenses.

Today, she is an exemplary figure in her neighbourhood. “I started teaching students and even without functional legs, I am standing on my feet,” says Renu, who stays with her mother and three sisters in Rajouri Garden.

When Nitu and Sonia faced the affliction, Renu helped them deal with it. While Nitu, 39, joined hands with Renu to give tuitions, Sonia completed her graduation and trained in fashion designing. “My body started weakening when I was 24. I cleared Staff Selection Commission exam 15 months back but haven’t got any job yet. There should be a quota for people with muscular dystrophy. I am eligible to join Anganwadi but they don’t have a quota,” says Sonia.

It was initially depressing for the sisters to be at home all day. They couldn’t go outside as they need assistance. “We have started coming out of our house for four years and it gave us confidence,” says Nitu.

They visit Rahat Centre for muscular dystrophy, Rajouri Garden, everyday to do their exercise. Virendra Kalra, head of the centre and a muscular dystrophic himself, says, “I started this centre five years ago. I was a part of the Indian Association of Muscular Dystrophy (IAMD), Solan, and they asked me to start a chapter in Delhi. But we need funds to help people.”

The Solan centre is run by Sanjana Goyal, a source of inspiration for thousands of dystrophic patients. “I held awareness camps across the country and realised there is little known about muscular dystrophy. So, we started a centre in Solan in 2016. Like my disability is my strength, I want everyone to approach life in a similar way,” says Goyal, who was honoured with the National Award for the Welfare of Persons with Disabilities in 2004.

Interact with the author @ruchikagarg271