25 October 2016Last updated

Making a difference

Meet the boy with the upside-down head

Julie Jones tells us why she decided to help a boy 6,000km away, and about the documentary that chronicles the touching journey of the boy whose head hung upside down until a stranger saved him

As told to Helen Roberts
19 Aug 2016 | 12:00 am
  • Source:Cover Asia Press Image 1 of 3
  • It was last year that I first saw heartbreaking pictures of Mahendra. His mother was quoted as saying they’d rather he be dead than suffer.

    Source:Cover Asia Press Image 2 of 3
  • When I met Dr Krishnan, I felt so proud of us all for helping this ill boy and his parents, who huggedme and started crying when they first saw me.

    Source:Cover Asia Press Image 3 of 3

As I stood over him, looking at his tiny thin arms and bent legs, I knew I was going to cry. I never imagined he’d look so ill and weak. While I’d desperately wanted to raise money for little Mahendra, I never imagined I’d ever get to meet him.

But three days after his surgery, when I finally came face to face with him in a hospital in India’s capital city Delhi, the reality was much harder than the pictures I’d been used to looking at.

As a mother of a four-year-old girl and a seven-year-old boy, I’m always affected by news articles about desperate children living difficult lives on the other side of the world.

In May last year, I’d put the children to bed and my partner Brian, 39, a mechanic, and I were sitting together after a long day when I started flicking through a popular news website on my mobile phone, which is when I saw the saddest photos in a news article about 12-year-old Mahendra Ahirwar, from Madhya Pradesh in 
central India.

He had a devastating neck condition that meant his neck was bent 180 degrees, and his mother was quoted saying: ‘we’d rather he was dead than suffer any longer’.

It was tragic. All I could think about was my own son, and how I would feel if I was in that situation.

I read some of the comments readers had posted under the article. Some read ‘if only we could help the boy’ and ‘is there somewhere we can send money?’. While everyone was looking to help, no one was actually doing anything. So there and then, without any hesitation, I got out my laptop and went on to a crowdfunding website and created an account to raise funds for him. I named it “Mahendra Ahirwar ‘cursed’ with no neck muscles”. And I explained the project would raise money to fund medical treatment and improve his quality of life. I set the target at £10,000 (about Dh47,300) and spent the next few days posting the link on social networking websites. I also posted the link on the comments section of the news article, hoping those people who wanted to help would do so.

A week passed and I hadn’t checked the response on the fundraising project as I was extremely busy with my job as a careers coordinator at a secondary school, and looking after my family. But when I eventually logged on, I was amazed to see we’d raised a staggering £12,000. I couldn’t believe it. Only 99 people had donated but we managed to reach such an amazing figure. People from all over the world came forward, and I was euphoric.

But then reality set in.

How on earth was I going to get the money to a boy I had never met in India?

I finally managed to get in touch with the journalist who had written the first article on Mahendra and his family, and with her help I got the money over to India.

But coincidentally, while I had decided to open a crowdfunding page to raise money for Mahendra, a kind spinal surgeon Dr Rajagopalan Krishnan, from Delhi, had also come forward to offer surgery to Mahendra free of charge. It felt good that people wanted to help. Instead of just saying it, we were doing it.

Over the next six months, with the help of the journalist in India, we managed to get Mahendra and his family back and forth between his home and Apollo Hospital in Delhi for tests. And Dr Krishnan was certain he’d be able to straighten Mahendra’s neck. It was coming together slowly.

In November last year a production company asked if they could follow the surgery for a documentary. And they wanted me involved. I was never one for seeking attention and hated the thought of being on TV, but I eventually agreed. It was now beginning to feel very real.

But while I was really happy I had helped to raise the funds to pay for Mahendra’s medical costs and travel, I was terrified something awful would happen and I’d somehow feel responsible. The surgery was a risk after all.

As part of the documentary, they wanted to fly me over to India and meet Mahendra. I had never been further than Spain for our family’s annual holiday, and I was terrified. The thought of flying alone, without my family, to a country I had never dreamed of visiting, filled me with terror.

On February 22 this year, Mahendra went into surgery, where Dr Krishnan removed disks in his neck and replaced them with bone graft he took from his hip, and then secured it all with a metal plate to keep his neck straight. He was in surgery for a total of 10 hours and I was sitting at home waiting for updates. I was a lot more emotionally involved than I had ever imagined. It was terrifying.

Three days later I arrived in New Delhi. I remember I couldn’t sleep the first night and I felt very vulnerable. But when I finally met Mahendra and his family, it was all worth it.

His mother, Sumitra, 36, and father, Mukesh, 41, who earns just Rs200 (about Dh11) a day as a labourer, were so thankful to me for raising the money that they just hugged me and started crying.

The moment I saw Mahendra lying in bed in the hospital, I felt a sudden surge of love for the young boy. I was so pleased to have started that fundraising page.

Even though he’d had such huge surgery three days earlier he was recovering remarkably well. And on my second visit, he was smiling and laughing, communicating in small ways because of the language barrier. I took him some toys and gifts, and he was overwhelmed, giggling.

I met all the team, even Dr Krishnan, and I felt so proud of us all for helping this little boy who had been so desperately ill and disabled. The hospital and the medical team were so nice and everyone had an emotional connection to little Mahendra.

By the time I was due to leave I was an emotional wreck; I just didn’t want to go. And knowing that I may never see Mahendra again was tough. Even though it was a short visit I had bonded with him and I desperately wanted to do more.

Since the surgery he has come on leaps and bounds. He’s received an anonymous donation of an electric wheelchair to get around, and even though he has to wear a neck brace for the next six to eight months, his neck is straight and he’s thriving. He’s writing, watching TV and is much more involved in his community. He plays with his friends, and believe it or not a straight neck has even made his voice louder.

I keep in touch with him and even though I’d love to see him again one day, I really have no idea if it’ll become a reality.

As I sit back and watch my kids lead a happy and healthy life, I am glad I was able to bring about a positive change in the life of an impoverished child and his family. I am proof that we can all help in some way. I have made a difference to the life of a little boy who a year ago had never heard of me. But now he’s got a chance in life. And I am so proud I made that happen.

Julie Jones, 35, lives in Liverpool, UK

As told to Helen Roberts

As told to Helen Roberts