By Sola Ogundipe
Thanks to funds raised by a kind-hearted British woman, Julie Jones, a 13-year-old Indian boy Mahendra Ahirwar, who suffered from a rare condition called congenital myopathy, that caused his head to hang upside down at 180 degrees, has undergone life changing surgery to straighten his neck.
The incredible surgery follows a Mail-online story about the daily struggles of Mahendra, who comes from Madhya Pradesh in central India.
Mahendra’s parents Mukesh Ahirwar, 41, and mother Sumitra Ahirwar, 36, spent years taking him to see doctors but no one could help.
But now the teenager has undergone life-changing surgery by a former NHS surgeon after Julie, a mother-of-two from Liverpool, set up a crowd-funding page raising £12,000 for treatment.
Spinal surgeon, Dr Rajagopalan Krishnan, from Apollo Hospital, in Delhi, performed the operation after Julie Jones made it possible.
His incredible story that was shown on Channel 5 Extraordinary People series, followed the family as they travel thousands of miles on an overnight train from their village to India’s capital city for the risky surgery that could have killed Mahendra.
In a first of its kind operation Dr Krishnan, who worked for the NHS for 15 years before returning to India to help extreme medical cases, operated on Mahendra’s spine.
Krishnan and his team opened up the front part of his neck—leaving the front of his cervical spine completely exposed—because of his extraordinarily thin skin.
They removed the disks from his neck, and replaced them with bone graft from his pelvis and then fitted a metal plate to secure the neck straight.
Two years ago, his parents stopped taking him to see doctors as it seemed no-one could help.
But with life a constant struggle, and Mahdendra in constant pain, they even admitted they would rather their son died than continue to suffer.
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 and little brother Surendra, eight, went to school and his older brother Lalit tried to find work he was left at home.
Even his friends used to leave him watch them play, he could never join in.
It was after reading his tragic plight that mother-of-two, Ms Jones decided she wanted to help.
‘It was tragic. All I could think about was my own son and how I’d feel if he was in that situation,’ she said.
‘While everyone was looking to help, no one was actually doing anything. So there and then, I got out my laptop, found a crowd-funding website and created an account.’
Within 28 days the page had raised £12,000 but she never imagined her kind actions would eventually lead to Mahendra having surgery and them meeting.
The careers co-ordinator at a secondary school was flown to Delhi to meet Mahendra three days after his surgery.
‘As part of the documentary, the producers wanted to fly me to India to meet Mahendra.
‘I’d never been further than Spain on holiday and was scared of flying. But I was keen to meet Mahendra in the flesh so I agreed.
‘When I arrived in Delhi the noise and exotic smells hit me instantly.
‘It was hard going, especially with the film cameras in my face. I felt vulnerable and barely slept the first night but when I finally met Mahendra and his family at the hospital it was all worth it.
‘His mum cried when she met me which then got me going.’
Even though she was only in Delhi for a couple of days she quickly bonded with Mahendra.
‘I wasn’t prepared for the love I’d feel for him,’ she said. ‘Meeting the boy whose photos I knew so well was both harrowing and uplifting. I was amazed to see him so thin.
‘By the time I was due to leave; I was an emotional wreck and just didn’t want to go.
‘Even though it was a short visit, I’d bonded with Mahendra and it broke my heart that I may never see him again.’
Mahendra spent two weeks in hospital before he had to make the arduous journey home to his village, where all his family and community awaited him.
The film follows Mahendra back home and shows him thriving.
He’s been given an electric wheelchair by an anonymous donor and he’s writing, watching TV and playing with his friends. Amazingly, his straight neck has even made his voice louder.
He has to wear a neck brace for approximately six months and needs regular check ups with Dr Krishnan back in Delhi but the future is looking much brighter.
Mahendra said: ‘I had no hope of getting better in life but now I’m ok my dreams have risen up. I want to be successful in life now.’
Dr Krishnan said he was shocked Mahendra had been left for as long as he had.
‘When I met Mahendra for the first time what surprised me the most was the neglect of his condition for 12 years without a diagnosis let alone treatment.
‘I was certain that I could improve his quality of life and that he’d be able to look at the world straight rather than upside down but I had to be sure I wouldn’t kill him.
‘The main problem that faced Mahendra was the anesthesia. But it’s remarkable to see him today.
‘There may be a need for further surgery in future but that will be determined by his neck stability once the neck has successful fusion.
‘He may not sag any more at the top but if I do have to do more surgery it will be much less invasive.’