Boy was born with 180-degree bent neck; ‘but after getting life-changing surgery, something devastating happened’!

Boy was born with 180-degree bent neck; ‘but after getting life-changing surgery, something devastating happened’!

According to his parents, the 13-year-old boy Mahendra was born with a rare condition, congenital myopathy, which means that the muscles in his neck were so weak that his head hung at a 180-degree angle.
His every waking moment was agony and he was entirely dependent on his family and friends for care. Mahendra’s struggles were so great that his parents actually wished for his death as a way to end his suffering.

Instead, a revolutionary new surgery has been performed that has everyone, especially Mahendra, seeing the world from a new angle. From an early age, it was clear Mahendra had problems. His parents, Mukesh and Sumitra, took their son to over fifty doctors throughout India. 
A 13-year-old boy in India whose head was hanging at a 180-degree angle has died just eight months after life-changing surgery to fix it.
Mahendra Ahirwar, who suffered from a rare condition called congenital myopathy which made the muscles in his neck so weak his head would hang, had been absolutely fine in the morning.
His mother Sumitra, 36, said he had his lunch on Saturday, lay down to watch TV and at around 3pm passed away.
Dr Rajagopalan Krishnan, who completed the surgery to straighten his neck in February this year, 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.' 

Dr Krishnan said: '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.'
Today Mahendra’s father Mukesh Ahirwar, 42, and his mother Sumitra spoke of their devastation.
Sumitra said: ‘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.
The family cremated Mahendra in a traditional Hindu ceremony at the weekend, surrounded by 25 friends and family.
Sumitra, who has two other sons Lalit, 17, and Surendra, 11, as well as daughter Manisha, 14, who was very close to Mahendra, 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.'
Mahendra hit the headlines with his extraordinary condition last year and his story touched the heart of mother of two Julie Jones, from Liverpool, who went on to raise £12,000 for Mahendra to have life changing surgery.
A documentary, The Boy Who Sees Upside Down, was aired on Channel 5's Extraordinary People series, in May, this year, and followed Mahendra’s remarkable journey seeing 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.
Dr Krishnan, from Apollo Hospital, in Delhi, who had worked for the NHS for 15 years before returning to India to help extreme spinal disorders, was amazed by Mahendra’s speedy recovery and had been overjoyed at the way his neck had healed.
Dr Krishnan added: '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.
'His lifespan was limited irrespective of anything else but at least he had several months of being able to see upright.
'The most common cause of death in congenital myopathy is from cardiopulmonary complications. There are so many types of congenital myopathy and many subtypes that it's impossible to identify which one Mahendra had and the prognosis in terms of life expectancy.
‘I still can’t believe he is gone and I will miss him greatly.’
Mahendra was overwhelmed with appreciation when he was given the opportunity to have his neck straightened earlier this year.
Sumitra said: ‘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 with it.
‘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.
‘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.’
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