A little boy forced to see the world upside down due to a rare genetic condition has undergone a life-saving operation thanks to the kindness of a stranger 4,000 miles away. Julie Jones read about the plight of Mahendra , a young boy from India, in an online feature. The image of the 12-year-old was one she couldn’t forget, the Liverpool Echo reported.
“I work with children the same age as him and I felt for this poor little boy,” she says.
So instead of shutting down and forgetting him Julie decided to raise thousands of pounds to change his life forever.
“It feels like such an achievement to have been able to do something,” she says. “But it wasn’t just me, it was the surgeon who operated on Mahendra, the people who gave money to help him, and so many others…”
“It’s just lovely to see him now, to see the smile on his face and know that, even from thousands of miles away, you can make a difference.”
Mahendra’s story has been shown in a new TV documentary screened on Channel 5. Made by the award winning producers of One Born Every Minute, The Boy Who Sees Upside Down tells of the ordeal of Mahendra Ahirwar from Madhya Pradesh, in central India, and Julie’s bid to raise the money for pioneering surgery which would help this young boy.
Due to a rare condition, Mahendra’s neck muscles are so weak he cannot hold his head up meaning that, as he is forced to hang it down, everything to him is upside down. Congenital myopathy renders him too frail to support his own body. Programme producers say:
“Although it is a genetic condition , the family’s neighbours in the remote village believe it is a curse. Unable to afford medical help Mahendra and his family had resigned themselves to the fact that that was to be his life forever.”
But they weren’t bargaining on the caring of a mum-of two, 4,500 miles away, who determined to do something about it and launched a crowdfunding page online to raise £12,000 to pay for an operation that leading surgeon Rajagopalan Krishnan had never even done before. Julie, 35, a careers co-ordinator at Fazakerley High School and formerly support worker, says:
“I read the article about a year ago and just felt so sad. I thought of all the children I was working with and the access they had – have – to health care in this country, and how if it was here he would have been treated.”
“The family would have been offered a wheelchair, neck braces, everything that would help and this little boy was left with nothing. It was just so upsetting.”
Unable to turn her back on Mahendra now she knew about him, Julie who has two young children, Joel, seven, and Macy, four, set up a crowdfunding page and raised the thousands needed in less than a month.
Surgeon Rajagopalan Krishnan who gave his time free of charge, performed the operation on Mahendra in March, she says, this year, to graft bone and insert plates to strengthen and support his neck. It was a difficult procedure. Mr Krishnan explains:
“After precautions were taken to prevent any major risks as a result of general anaesthesia, which in severe disorders of this nature can lead to complications, I went in from the left side of his neck, exposed virtually the entire cervical spine and removed discs and cartilaginous end plates at every level to be included in the fusion.
“The next step was to fill the gaps with autograft bone from his pelvis and then to fix the neck in the straight position with a long plate and multiple screws from C3 (third cervical vertebra) to T1 (the topmost vertebra in the thoracic spine). You imagine ‘what if it was your own child’? It was a lovely feeling to know I’d helped.”
In spite of the language barrier Julie hopes to keep a check on Mahendra’s progress, possibly through the iPad that was bought with some of the remaining money raised:
“Maybe we can Facetime. It will be nice to know how he is doing and, possibly, even see him again in the future..”
Julie flew to India to meet Mahendra just days after his operation: “He has got a gorgeous smile,” she says, “and at first I was just crying non-stop.
“He looked in shock and so uncomfortable but he would, he had just had a major operation. I could just see this tiny body with no muscle, just bones, and it was really emotional. I stroked his hair and, through an interpreter, asked how he was.”
Julie goes on:
“I suppose I am quite a compassionate person but when you have children of your own too it brings out the maternal sympathy. People don’t have to be part of your family for you to care. They don’t have to live down the road from you. They can live on the other side of the world…”
“I am so grateful to all those who donated money and to everyone involved, so a that a young boy might now have a better quality of life than he and his family could ever have hoped for.”
Thank God for he bigheartedness!