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13-year-old Mahendra Ahirwar was born with congenital myopathy, a muscle disorder that results in weakness and floppy limbs. Patients with severe cases of congenital myopathy experiencing breathing problems while others generally have muscle or skeletal issues.
Ahirwar’s congenital myopathy meant that his neck was too weak to properly support his head. His head hung, upside down, on his neck at a 180-degree angle.
Just a year ago, Ahirwar and his condition were covered in news stories across the globe, catching the attention of many – like Julie Jones of the UK, who raised an incredible sum of money for Ahirwar to undergo corrective surgery.
In May 2016, a documentary called The Boy Who Sees Upside Down was made about Ahirwar, his story, and his recovery from the surgery that removed several disks in his neck, replaced these disks with bone grafts, and inserted a metal plate into his neck to secure it, right side up.
Dr. Rajagopalan Krishnan, Ahirwar’s surgeon, recalled that Ahirwar “was among the bravest children I’ve seen since my return to India and I see the most terrible and neglected deformities.
“For me, the joy and smile on his face when his head stopped sagging was one of the defining moments in my decision to operate on children with neglected and awful spinal disorders.”
Everyone who knew Ahirwar loved him and knew him for his incredibly bright, contagious smile. His entire family wanted nothing more than the best for him.
On the day of Ahirwar’s untimely death, his mother remembered that it had been an entirely normal day.
“He’d been playing in the morning, had breakfast, took a shower and took a ride on his wheelchair inside the house. After having lunch, he asked to watch TV. I switched on his cartoon, and he coughed twice,” she said.
“He asked me to rub his chest and then tried a third cough but died.”
Dr. Krishnan suspects “that a massive cardiac or pulmonary event might have occurred and often there are no premonitory symptoms in such cases…myopathy and poor chest muscles caught up with him in the end.”
Ahirwar was laid to rest in a traditional Hindu ceremony this weekend. His family just hopes that “wherever [Ahirwar] is, he is pain-free.”
