A 13 year old boy has his head hung upside down and because of it he was left an outcast in his village in India. Now he has had a life changing surgery to straighten his neck. 13 year old Mahendra Ahirwar suffers from congenital myopathy. It is a rare condition which has left his neck muscle so weak that his head would hang at a 180-degree angle. His parents 41 year old Mukesh Ahirwar and 36 year old Sumitra Ahirwar got no help even though they spent years taking him to see doctors.
But after a mother-of-two from Liverpool set up a funding page for him and raised £12,000 for treatment, he has not undergone life-changing surgery by a former NHS surgeon. After Julie Jones made it possible, the surgery was performed by Spinal surgeon Dr Rajagopalan Krishnan, from Apollo Hospital, in Delhi. His life changing story is even being shown on Channel 5 Extraordinary People series.
As the family travel thousands of miles on an over night train from their village to India’s capital city, the documentary follows them. The surgery was very risky and he could even end up dy!ng. As Mahendra endures a ten hour operation, the film follows the family and him. The disks from his neck are replaced by bone graft from his pelvis. They then fit a metal plate to secure the neck straight.
As it seemed that no once could help, 2 year ago his parents stopped taking him to see doctors. They admitted that they would be happier if their son died because he would struggle with life and was in constant pain. As soon as he woke up he relied on his mother for almost everything. He could never even join his friend to play and they would leave him just to watch.
Ms Jones said, ‘It was tragic. All I could think about was my own son and how I’d feel if he was in that situation. 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.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.’