12-year-old Indian boy whose head hangs at a 180-degree angle due to a rare condition

12-year-old Indian boy whose head hangs at a 180-degree angle due to a rare condition

Undiagnosed: Mahendra Ahirwar's parents say they would rather see him dead than suffer the way he is nowHis neck is bent and his head hands from his body

The desperate parents of a boy whose head hangs at a 180-degree angle have admitted they would rather he died than continue to suffer.

Mahendra Ahirwar, 12, from Madhya Pradesh in central India, suffers from a rare condition that makes his neck bend and his head hang from his body.

His weak backbone means he can’t stand or walk and is restricted to a sitting position. Mahendra can just about crawl but needs help to eat and go to the toilet.

Mahendra's mother Sumitra Ahirwar, pictured here with her son, says watching his life is 'devastating'

His father Mukesh Ahirwar, 40, and mother Sumitra Ahirwar, 35, who both work as labourers when they can, say they have consulted more than 50 doctors across India but none could diagnose his condition.

‘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.’

She added: ‘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.’

Shockingly, members of the community have blamed Mahendra’s condition on Mukesh’s past sins and believe he is to blame for his son’s disability.

Sumitra, who also has healthy 16 and 10-year-old sons and a 14-year-old daughter, did not visit a doctor when she was pregnant with Mahendra.

Family: Mahendra pictured with his mother Sumitra (left), sister Manisha (second from left), and brothers Surendra (second from right) and Lalit (right)

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.’

The couple only noticed their son’s head was starting to hang when he was about six months old.

 If doctors cannot treat my son it is better that God takes him

‘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,’ his father explained.

Mukesh, who earns about Rs200 (£2) a day on construction sites, has borrowed money from his friends and relatives to help find medical treatment for his son.

But he said two years ago he decided to stop taking Mahendra to see any doctors, adding: ‘I took him to all the hospitals that I could afford.

‘Even India’s premier hospital, All India Institute of Medical Sciences 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.’

Sumitra has now lost all hope of a treatment being found for her son and says: 'If doctors cannot treat my son it is better that God takes him'
Mukesh added: ‘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.’

Mahendra doesn’t go to school so his only friends are his siblings and his cousins.

Dr Shashidhar Tatavarthy, an ear, nose and throat 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.’

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.’

 

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