In Photos | 'Living One Day At A Time': Parents Of Children With DMD

Parents of children suffering from Duchenne Muscular Dystrophy held an awareness rally on Friday at Jantar Mantar.

FIT met with these parents and children to bring to you their stories and their demands from the government.

(Photo: Garima Sadhwani/FIT)

Duchenne Muscular Dystrophy is a genetic disorder due to which muscle fibers do not regenerate in a patient’s body. To put it simply, because of the lack of dystrophin gene in their body, their muscle cells are not replaced once they get damaged. This disease that mostly affects young boys is fatal. Most patients diagnosed with it get wheelchair bound during their teenage years and do not live past the age of 30.

Balkrishna, a senior Noida-based journalist, is a DMD parent. His twin sons, both in class 10th, suffer from the disease. Their first symptoms came up at the age of six. They’d fall a lot, walk on their toes, and their calf muscles were enlarged. Most patients suffering from DMD first show symptoms in their lower body. While his sons are not wheelchair bound, they have great difficulty walking short distances and cannot climb stairs. 

The bigger issue with DMD is that as the disease progresses, other organs of the body start getting affected too. Balkrishna shares that on a WhatsApp group he shares with other DMD parents, some or the other person posts every second day about their kid succumbing to DMD.

For these kids, immobility also hampers whatever little dreams they have for themselves. Balkrishna’s kids, though enrolled in school, are unable to attend regularly. Some or the other health concern keeps them from school. He shares that just last week, one of his sons fell and hurt his head badly. “My wife is constantly on her phone when the kids are in school, worrying if they’re okay or not,” he says. 

Not just that, when kids get wheelchair bound, a lot of them have to drop out of school. With most public places not being accessible for people with disabilities, even going to the school canteen (the only way for which is through a set of stairs) is a dream that Balkrishna’s sons can’t fulfil. 

Seema Verma (32) shares that she’s planning to get a 'handicap certificate' made for her 10-year old son and transfer him out of his current school next year. “I have to lift him up and take him to his class on the fourth floor. The classroom is not accessible for my kid, and the school told us we should enroll him somewhere else. Doctors have told us to keep our son at home and not take him anywhere if we want his safety.”

But Verma’s son, Uday, loves going to the school. Even though he has no support there and his heart starts beating very fast when he walks a little, he has dreams of growing up to be a doctor. 

And while the physical disabilities hurt, there’s mental pressure too. Balkrishna’s kids, who are now old enough to surf the internet for their questions, often end up asking him how long they’re going to live. He, in turn, asks, “What does a parent say to that?” He’s stopped thinking about the future now because he worries if his kids might even have it.  Uday also often asks his mother why he can’t play with the other kids, when he’ll get better, or why God did this to him. His mother, who has been told that her son won’t live beyond 14, doesn’t know how to respond to any of his questions.

Monica, in her thirties, who is a Greater Noida resident, shares: “During a Mann Ki Baat session, PM Narendra Modi had addressed DMD but apart from that lip service, nothing has been done. We just want medicines for our kids.”

Monica’s son, Aayansh, is in the second grade. On most days, a school staff member helps him reach his class. But on the days no one is there to help, his parents have to stay by his side for support. The seven-year-old says, “I am here today so that I can request Modi ji to help us get medicines. I want to become a builder when I grow up because I want to make big buildings and make India proud.”

Aayansh’s mother is often worried for him though. He doesn’t have many friends because he can’t run around like the other kids. Monica says, “We live one day at a time, thanking God if the day goes without any health worries. People around us blame us for not taking care of them, for not massaging them as infants, for not feeding them properly.”

The problem also is that a lot of doctors are unable to diagnose DMD based only on primary symptoms. Verma had to go through three sets of doctors at different hospitals before Uday was given a diagnosis. And when DMD is diagnosed, doctors usually prescribe steroids to provide temporary mobility. As a side effect of that, Balkrishna’s sons have developed cataracts in their eyes. 

Tushar (30), a Nasik resident, who has been showing DMD symptoms since he was 15 was only diagnosed with the disease last year after a biopsy. He consulted a cardiologist for eight years because he didn’t know what was wrong with his health. The doctors and authorities in Maharashtra didn’t help either. In an RTI he filed to know how many people in India suffered from DMD, he was told there was no data about the disease.

Tushar’s battle with DMD hasn’t been easy either. An HR professional, he’s had to take permanent work from home from his company because of mobility issues. He says, “I am partially wheelchair bound. There’s so much frustration because I can’t even go to the washroom by myself.”

What these parents want is for the Centre to facilitate drug trials and indigenous research on DMD in the country so that treatment can be more affordable and accessible for people.

Currently, the experimental drugs available for DMD patients cost anywhere between Rs 2.5-4 crore per year, and one would have to take them lifelong only for survival since there’s no cure for the disease. 

The parents also want the government to come up with a coherent database for DMD patients. They want people in the medical fraternity to acknowledge that a huge number of patients suffer from this and that they don’t deserve the authorities’ indifference.

Another demand is that a single window panel be created where the health ministry tracks global research being done on the disease. Additionally, they also want some sort of financial assistance from the government for the families of DMD patients to help them deal with the comorbidities that are a side effect of DMD.

Parents of children suffering from Duchenne Muscular Dystrophy held an awareness rally on Friday, 24 March, at Delhi’s Jantar Mantar. 

FIT met with these parents and children to bring to you their stories and their demands from the government.