A 13-year-old boy in India who lived his life with a bent neck now celebrates seeing the world straight and is finally going to school.
Mahendra Ahirwar suffers from a rare condition called congenital myopathy. It made the muscles in his neck so weak his head was hanging at a 180-degree angle for over a decade.
His parents Mukesh Ahirwar, 41, and mother Sumitra Ahirwar, 36, spent years taking him to see doctors but no one could help.
But now, after life-changing surgery by a former NHS surgeon and paid for by the money raised by a mother-of-two from Liverpool who set up a crowd-funding page, Mahendra is seeing the world straight.
His father Mukesh said: ‘He looks great. His neck is straight; and his life is so very different. He’s in a good place. It was heart breaking to see him earlier; we were on the brink of losing him. When his neck was bent he was too shy to speak but now he feels like a normal person and we can see his confidence levels growing. He is very happy now. He says he can feel the difference and he loves it.’
Mahendra, from Madhya Pradesh, in central India, was born with a normal neck but as he grew older his bones became weak and his neck began to bend.
After years of trying to find treatment Mukesh stopped taking Mahendra to see doctors altogether two years ago and they decided to live as best they could. But life was a struggle. They even admitted they would rather their son die than continue to suffer.
‘Watching his life is devastating. He cannot do anything by himself. He just sits in a corner of the room all day.’
As soon as Mahendra used to wake up in the morning he relied on his mother to feed him, bath him and dress him. While his sister Manisha, 14, and little brother Surendra, 11, went to school and his older brother Lalit, 17, tried to find work, he was left at home. Even his friends used to ignore him.
However, after Mahendra’s story made headlines in the British media last year, medical expert and spinal surgeon Dr Rajagopalan Krishnan, from Apollo Hospital, in Delhi, who had worked for the NHS for 15 years before returning to India to work on extreme medical cases, came forward offering to help.
And thanks to generous members of the public who donated £12,000 to a crowd funding website created by Julie Jones, from Liverpool, Mahendra was finally able to receive life changing surgery.
In a first of its kind operation Dr Krishnan and his team tackled pioneering surgery where they had to operate on Mahendra’s spine in a ten-hour operation by opening up the front part of his neck – leaving the front of his cervical spine completely exposed – because of his extraordinarily thin skin.
Dr Krishnan was able to remove the disks from his neck, and replace them with bone graft from his pelvis and then fit a metal plate to secure the neck straight.
‘When I met Mahendra for the first time what surprised me the most was the neglect of his condition for 12 years.’
Mother of two Julie Jones, from Liverpool, decided to open a crowd funding website after she saw a news article on Mahendra and desperately wanted to help.
Julie, who works as a careers co-ordinator at a secondary school, said: ‘It was tragic to see pictures of Mahendra as he was. All I could think about was my own son and how I’d feel if he was in that situation.’
Within 28 days Julie raised a staggering £12,000 but she never imagined her kind actions would eventually lead to Mahendra having surgery and changing his life.
Mahendra spent two weeks in Apollo hospital in February this year before eventually being discharged and allowed to go home to recover with the hope his neck would not bend again.
But now, seven months on his neck has remained straight and Mahendra’s future is looking much brighter.
‘Happiness has found our address after Mahendra’s surgery. I feel so blessed.’
Julie managed to raise further funds and has now bought Mahendra amenities that will make his life a lot more comfortable in the future such as a collapsible wheelchair, a commode, a fan, an umbrella and a comfortable sitting cushion.
An anonymous donor also gifted the family an electric wheelchair last year and Mahendra has found great independence since.
So much so, Mahendra has been going to the local school for the last eight weeks and is learning to write.
Mukesh said: ‘My wife and I talked about it and took the decision to send him to school. We’d never thought about it before, because he was never able to go, but now we have a responsibility to help him get an education. It’s possible for him now. My wife sometimes takes him to school or he goes with his little brother.’
Dr Krishnan will continue to see Mahendra and monitor his progress but so far he’s over joyed with his recovery.
‘It’s remarkable to see Mahendra today. He’s now able to hold his head up straight and his instrumented levels are fusing well.’
‘I am pleasantly surprised by his progress. A multiple level fusion in a child his age could have failed so to see him recover like this is wonderful. He seems to have changed from a quiet diffident boy into an extrovert and articulate young man. He is more active and his family say he doesn’t need supervision as much now.’
‘I’ll continue to see him every three months over the next year. If his neck remains stable, especially at the craniocervical junction, I will be ecstatic. I expect he will need further surgery one day and I’ll need to see him regularly in anticipation of this problem. But now I expect him to live a normal life span and a lot more comfortably than he has done over the last 12 years.’