A 13-year-old boy with a rare condition causing his head to sit at a ninety degree angle has died less than a year after he had life-changing surgery to fix it.
Mahendra Ahirwar, suffered from congenital myopathy which made the muscles in his neck so weak his head would hang to one side, reports the Daily Mail.
Mahendra hit headlines last year when his story touched the heart of Julie Jones, from Liverpool, who went on to raise £12,000 for Mahendra to have his life-changing surgery.
His mother Sumitra said he had his lunch, lay down to watch TV and died quietly in no pain.
She said:
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 ran outside, I kept shouting ‘my son isn’t moving’ and a neighbour phoned the doctor.
Tragically, when the doctor arrived just 15 minutes later he declared Mahendra dead.
Dr Rajagopalan Krishnan, who completed the surgery to straighten Mahendra’s neck, said he was left shocked by his sudden death.
He said:
The most common cause of death in congenital myopathy is from cardiopulmonary complications. I think myopathy and poor chest muscles caught up with him in the end.
I still can’t believe he is gone and I will miss him greatly.
A documentary, The Boy Who Sees Upside Down, aired back in May, followed Mahendra’s incredible journey.
It saw him endure a ten-hour operation to remove disks from his neck, and replace them with bone graft from his pelvis before a metal plate was fitted in his neck to secure it straight.
Sumitra said:
My little son had the privilege of being treated by the biggest doctors in this country. For him, seeing a different city was like seeing a different world.
Dr Krishnan gave him a new life. He gave my son a new vision, a new way to see the world. But in the end it was for a very short time. He enjoyed his new life for just eight months. I wish he could have lived longer to see more.
Our thoughts are with Mahendra’s family.
