advertisement
Video Editor: Sandeep Suman
Twenty three-year-old Manish and his three other siblings, Manoj, Susheela, and Aneesh, had a normal childhood growing up in Madhya Pradesh's Rewa district.
But, as they turned older, around the age of 7-9, they developed a rare form of muscular dystrophy – a genetic disorder which causes progressive muscle loss and weakness. This changed their lives drastically, and permanently.
Susheela, 30, hasn't walked in the last 23 years.
28-year-old Aneesh finds it difficult to stand up straight.
23-year-old Manish moves around by dragging a chair or with the help of a wheelchair.
Youngest brother Manoj is a dependent, too.
The eldest sibling, Susheela, hasn't walked in 23 years. "The earliest symptoms were weakness and fatigue, but with time, we started losing all our bodily energy. It was like something was slowly sucking out all the power from our bodies," she said, recalling the agony of growing up with the disease.
“When my sister Susheela became bedridden, we were very sad. By then, the disease had started showing symptoms in all of us, but we never thought that we would have to quit school. As time passed, we couldn’t walk anymore. My backbone had started to bend inwards and my head tilted upwards, making it impossible to look on the road or to walk straight. I could no longer go to school and had to quit my studies,” Manish said.
But it was their father, Ram Naresh Yadav, who had developed the disorder first.
Premvati was a child bride. When she was married off to Ram Naresh, he was healthy. But by the time she started living with her husband, he had developed symptoms of the rare disease.
“Muscular dystrophy is a genetic disorder, transferred from the parent to the offspring," Dr Manish Sinha, a neurologist in Kailash Hospital, Noida, explained.
The incidence rate of the rare disease is one out of 4,000 children. "With progressive muscle loss, the body slowly loses its ability to function. However, there's no treatment," he said.
“When they were born, they were so beautiful and healthy. But as they grew up and crossed the age of 5, their hands and legs started getting thinner… almost like their bodies were drying up. There were no other symptoms... no fever, no pain. But they started to walk differently,” Susheela said, her eyes fixated on her son as he tried to get up from the cot.
The family of seven lives on three acres of land in Rewa district, Madhya Pradesh. Suresh, the oldest brother, is the only sibling who was spared by the disease and is healthy. He works as a farmer to feed the family.
Early on, there were symptoms, but nothing too painful. There were signs, but no clear diagnosis.
The family moved from one hospital to another, unable to find help. Finally, in October 2021, the family visited the All India Institute of Medical Science (AIIMS) in Delhi where they were told that they are suffering from a rare genetic disorder.
According to Dr Sinha, patients suffering from muscular dystrophy have a lifespan of 20-40 years because of various factors, including weakness, muscle loss leading to other problems, and diminishing immunity.
The family has had a hard time figuring out daily expenses and lack the resources to seek any medication for their disease, since none of the sick siblings are equipped to earn.
Suresh has no other choice but to continue to fend for the family, to feed them with whatever little income he can generate by farming.
(At The Quint, we question everything. Play an active role in shaping our journalism by becoming a member today.)