It is a sad ending for Mahendra Ahirwar, a 13-year-old boy in India who was born with a rare condition called congenital myopathy. The muscles in his neck were so weak, they could not support his head, and so he saw the world upside down.
But mother of two Julie Jones, from Liverpool, found compassion for Mahendra. She raised thousands for Mahendra to have a life-changing surgery. The documentary The Boy Who Sees Upside Down followed Mahendra’s journey to the 10-hour operation.
Dr. Krishnan from the Apollo Hospital in Delhi, was one of the surgeons, and was overjoyed at Mahendra’s speedy recovery.
This past Saturday was like any typical day, reports the Daily Mail. His mother Sumitra said, “He’d been playing in the morning, had breakfast, took a shower and took a ride in his wheelchair inside the house. After having lunch, he asked to watch TV.”
Around 3pm, things took a turn. “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 neighbor 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.”
This weekend the family held a traditional Hindu ceremony for Mahendra, and afterward, spoke of their devastation. Mahendra had wanted to open a general store, and his parents were going to help him get set up.
Sumitra said, “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 Mom.’” His voice echoes in my ear. The way he used to call me. I am devastated. I feel everything is over.”
Dr. Krishnan believes, “Mahendra’s death is not a complication of the surgery or any other intervention. If that was the case, he would have died on the operating table or in ICU, not eight months later.” He believes the most likely cause of death is “a massive cardiac or pulmonary event.”
Although Mahendra had just eight months of being able to see upright, his mother says they were precious months. “My little son had the privilege of meeting foreigners and good people. He was treated by the biggest doctors in this country. For him, seeing a different city was like seeing a different world.”
“He used to get so excited to see big cars. All the presents he received were always on his bed. He was playing with his car until his last day, he was very possessive of it…. I wish he could have lived longer to see more. I will miss him. I’ve no idea how I’ll cope with the loss. He’s with God now. I hope he is able to find peace. He’s had a painful life. I hope wherever he is, he is pain free.”