Mahendra Ahirwar, a 13-year-old boy from India who lived most of his life with his head hanging to one side has died months after he underwent a corrective surgery to cure his bizarre condition.
Ahirwar is said to have suffered from congenital myopathy, a condition which made the muscles in his neck so weak that his head hung at an almost 180-degree angle.
In February, he was able to undergo surgery to straighten his neck following an international fund-raising campaign.
There were high hopes for Ahirwar after his operation, only later for hum to be announced dead by his family. He was said to have died suddenly while watching television.
UK’s Mirror reports that a former NHS doctor who completed the surgery to straighten the boy’s neck, Dr Rajagopalan Krishnan, said he was left shocked by his sudden death.
He said: “I can only conjecture that a massive cardiac or pulmonary event might have occurred and often there are no premonitory symptoms in such cases.
“I think myopathy and poor chest muscles caught up with him in the end.”
“He was among the bravest children I’ve seen since my return to India and I see the most terrible and neglected deformities,” he continued.
“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.
“I am sure his absence will cause anguish to everyone who was involved in his care, his smile was brighter than the sun after his neck was straightened.”
Ahirwar’s 36-year-old mother, Sumitra, spoke of the devastation at their son’s death.
She told Mirror: ”I had so many plans and dreams for him. I wanted him to grow big. He dreamt of opening a general store and we were going to help him. His dreams are shattered now.
“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. He asked me to rub his chest and then tried a third cough but died.
“I started crying loudly and called his name. I ran outside, I kept shouting my son isn’t moving, and a neighbour phoned the doctor.
“The doctor came within 15 minutes and declared he was dead. I fell to the floor and held him tightly. I didn’t want to let him go.”
Ahirwar got cremated by his family in a traditional Hindu ceremony surrounded by 25 friends and family at 9am on Sunday morning.
Sumitra, who has two other sons Lalit, 17, and Surendra, 11, as well as daughter Manisha, 14, added: “His things are scattered everywhere. Our house is filled with his belongings.
“Nobody thought this day would come. He was fine. He even said: ‘I’m absolutely fine Mum’. His voice echoes in my ear. The way he used to call me. I am devastated. I feel everything is over.”