Desperate parents of a boy who has lived his entire life with a bent neck have shockingly admitted they want him dead so he no longer suffers.
Mahendra Ahirwar, 12, from Madhya Pradesh, in central India, suffers from a rare congenital condition that makes his neck bend and his head hang at a 180-degree angle.
His weak backbone means he cannot stand or walk and is restricted to a sitting position all day every day.
Mahendra can just about crawl but needs his mother’s help to be able to eat and go to the toilet.
His father Mukesh Ahirwar, 40, and mother Sumitra Ahirwar, 35, who both pick up work as labourers when they can, have consulted more than 50 doctors from various parts of India but none could diagnose his condition.
And now the distressed parents want to see Mahendra dead rather than carry on living as he has been.
‘I cannot see him suffer anymore,’ said Sumitra. ‘Watching his life is devastating. He cannot do anything by himself. He just sits in a corner of the room all day. It’s no life.’
Sumitra, who also has a healthy 16-year-old son, a 14-year-old daughter and a ten-year-old son, did not consult doctors when she was pregnant with Mahendra.
Mukesh said: ‘Our other children had all been born normally with no problems so we never thought to consult a doctor or have an ultrasound done with Mahendra, and he was born at home just like his siblings.”
For the first six months he was like any normal baby and very active
The couple only noticed their son’s head starting to hang when he was about six months old.
‘For the first six months he was like any normal baby and very active. But when he started developing and beginning to sit we noticed his head and neck were not right,’ Mukesh added.
‘At first we thought he was just a little weak and he’d be fine in time but by his third birthday he wasn’t able to keep his head upright at all.’
Mukesh, who earns about Rs200 (£2) a day on construction sites, has spent more than Rs 2 lakh in doctor bills in a search for treatment for his son.
He borrowed money from his friends and relatives but two years ago he decided to stop taking him to see any more doctors.
Mukesh said: “I took him to all the hospitals that I could afford. Even India’s premier hospital All India Institute of Medical Sciences (AIIMS) in New Delhi but after spending two weeks there doctors failed to tell us if my son could be treated.
‘With a broken heart we returned home and decided to raise him and try to give him as comfortable a life that we can.’
And Mukesh is yet to repay the loan to his family and friends.
Neighbours and people in the community have blamed Mahendra’s condition on Makesh’s past sins and believe he is to blame for his son’s disability.
He said: “People say bad things about him, and they often laugh at him. It really hurts us. We cannot tolerate people’s attitudes and discrimination. They say I must have committed some terrible sins and this is why he is suffering, it’s awful.’
People say bad things about him, and they often laugh at him
Mahendra doesn’t even go to school so he only has his siblings and cousins to call friends.
Dr Shashidhar Tatavarthy, a Paediatric ENT Consultant, at Delhi’s Artemis Hospital, thinks Mahendra has a muscular disorder.
He said: ‘This is one of the rarest of rare cases. His condition could be due to a spine anomaly or muscular disorder but it can only be concluded after a thorough investigation.’
Torticollis, also known as Wry Neck or Loxia, is a dystonic condition defined by an abnormal, asymmetrical head or neck position. A multitude of conditions may lead to the development of torticollis including muscular fibrosis, congenital spine abnormalities, or toxic or traumatic brain injury. The cause of congenital muscular torticollis is unclear.
Sumitra has now lost all hope of a treatment being found for her son.
She said: ‘I have to carry him like a baby everywhere but he is 12 years old, how will I carry him when he grows even older?
‘If doctors cannot treat my son it is better that God takes him.’
But Mukesh is still hoping for a miracle.
‘If doctors can treat babies born with severe disabilities like two heads and give them lifesaving operations then why not my son?’ he said. ‘I still have so many hopes and dreams for him. I want to see him go to school and play with other kids. I want to see him living a normal life and I am hoping that my wish will be fulfilled one day.’