Boy With Rare Genetic Disorder Gets Second Chance
There are many among us who have that philanthropic streak and wish we could do something tangible for the unfortunate or ones that need help. We think of all the many things we could do or could have done and not actually get down to doing that thing that matters. Either we say, we wish to, but cant because there isnt enough money to spare or that we dont know of someone close who might be in need of help such as suffering from a genetic disorder.
We usually end up with an excuse to defend our actions and not do enough to convert our dreams into a reality for someone. Honestly, we are never really that far from helping someone, provided our desire is strong enough.
Far away and yet a desire to be close enough to help
Far away in Liverpool, Julie Jones read online that that a boy, Mahendra Ahirwar in India was suffering from a rare genetic disorder which is termed Congenital Myopathy. This condition greatly debilitated his neck muscles because of which he couldnt raise his neck at all.
His head was in upside down position at all times. She was so moved by his plight and would often re-read the online piece and wondered if she could do something for him. She was a mother of two aged similarly and wondered what if something like that struck one of her children.
Empathy soon forced her to start raising a small fund, because all she could think of was doing something, not merely wanting to do. While Mahendras parents had stopped seeking any further medical help and they just couldnt afford to anymore. They had resigned to whatever fate had in store for him.
Julie on the other hand, had managed to collect a fund of nearly $17,000 that was enough to pay for a neck operation which would allow Mahendra to lead a normal life once again. With the money in hand, she contacted the doctor, Rajagopalan Krishnan who had promised to perform this intricate operation without charging his fee.
The situation was difficult yet everyone chipped in
This was to be a very difficult operation, more so because the doctor had never performed such a procedure before. The operation would require inserting plates and bone grafting and such other methods to help Mahendra regain neck mobility.
She flew down to India with an air of expectancy and was warmly accorded with a lovable welcome by the boys mother. She then, proceeded to meet the boy and was surprised to see, his thin stature and the obvious discomfort he was actually in. She had seen his photo online several times, but seeing him for real was really very moving.
Although, the surgical procedure will be very difficult and the boy would need to wear neck brace for up to six months after surgery, she was happy that she was here and finally doing something that made her desire into a reality for someone so far away.
Julie says, you dont have to be near someone to be able to help and you just have to have the strong desire and will to go out and do something concrete instead of think. She was also quick to express her gratitude for all the people who helped her raise the fund so that Mahendra might have a better life to lead after the surgery for his genetic disorder.