One teenager, Mahendra Ahirwar, who lived in India, came to the world’s attention and a woman took up his cause. She rallied others to raise money for corrective neck surgery. Mahendra had the surgery and seemed to be doing well. Unfortunately, he died unexpectedly of a heart attack, something which happens with this disease due to problems with muscle in the body.
A 13-year-old schoolboy who lived most of his life with his head hanging to one side has died just months after life-changing surgery to cure the rare condition.
Mahendra Ahirwar sufferedfrom congenital myopathy, which made the muscles in his neck so weak his head hung at an almost 180-degree angle.
In February the teenager received pioneering surgery to straighten his neck following an international fund-raising campaign.
The operation appeared to have been a success. …
But this week the teen’s family announced Mahendra had died suddenly while watching television over the weekend.
Dr Rajagopalan Krishnan, a former NHS doctor who completed the surgery to straighten the teenager’s neck, said he was left shocked by his sudden death.
He said: “I can only conjecture that a massive cardiac or pulmonary event might have occurred and often there are no premonitory symptoms in such cases.
“I think myopathy and poor chest muscles caught up with him in the end.”
Dr Krishnan added: “Mahendra’s death is not a complication of the surgery or any other intervention. … “I think his lifespan was limited irrespective of anything else but at least he had several months of being able to see upright.” The most common cause of death in congenital myopathy is from cardiopulmonary complications.
“There are so many types of congenital myopathy and many subtypes that it’s impossible to identify which one Mahendra had and the prognosis in terms of life expectancy.
“I still can’t believe he is gone and I will miss him greatly.”
Julie Jones, 35, read about 12-year-old Mahendra Ahirwar from India online, finding out he was only able to see the world upside down due to a rare condition. As a [mother] herself, Jones said she “couldn’t forget” his story and decided to do something about it. She raised £12,000 on a crowdfunding page to pay for an operation to strengthen Ahirwar’s neck. Ahirwar’s story was told on Channel 5’s ‘The Boy Who Sees Upside Down‘ on Thursday 19 May [ ].
There are others with this condition as well.
What is the point of difficult biology from the perspective that life is a simulation? A soul lesson beyond coping with discomfort and people’s cruelty towards those who are different, may be that anyone can find sufficient sustenance and joy in life with the love of just one other human being.
Which is to say, be love for someone today. Start simple, by keeping your word, or with a random act of kindness.