Campaign Ended! The campaign ended on July, 23 2017
The campaign comes to an end. The reason for starting the campaign was 'awareness' about the disease while trying to generate two months expenses for the emotionally and financially stressed family. I could achieve both!
Unlike the end date for the campaign which could be so clearly defined, ALS/MND does not have any clear end date for the afflicted. This is the most frustrating part of the disease. Most of the country, including ours, do not permit assisted suicide for people who are paralyzed, helpless and in pain. While assisted killing is a very debatable topic, the expensive medical care required leaves the family emotionally and financially drained.
However, The family decision is not to extend the campaign/collection date further and I fully respect their decision. When they are in need again, they know that his supporters are just around the corner whom they can reach out to.
While the immediate needs of Alok's family is met through the finances collected, it is going to be one tough journey for Alok, more than his family. But Alok is a brave man. May God give him enough strength to bear the pain as this dreadful disease progresses.
Hoping against all hopes that the gene behind thus disease is very soon isolated and a cure soon found.
With folded hands, I thank all supporters of this campaign. You have done your best, in whatever way you could.
It is, indeed, a beautiful world, full of angels like you. God bless you.
Will be closing the campaign today. It's been a journey of learning for me on so many new aspects. Truly a very humbling experience.
While this campaign closes tonight , there is another campaign initiated by Alok's friends to identify 100 friends and well-wishers who could provide a sustainable support of an offordable ?1000 per month. Wishing this new campaign a successful conclusion as well!
Thank you all supporters of this campaign! This means so much for Alok's family.
Also completed the promised half marathon for Alok ji this morning.
Alok Gupta, an engineer and an MBA, was just like you and me. Leading from the front, he taught us the beauty of what honest dealings could do for business. He wore several hats in MNCs like General Manager, Managing Director, Chairman etc. He was as hale and hearty as anyone of us, till the dreadful disease hit him in May 2013. He was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as MND (Motor Neuron Disease) or LGD (Lou Gehrig's Disease).
ALS is a medical condition which affects the function of the nerves and muscles and makes a very quick progress on the afflicted person. Our brain and nerves are connected at a point where millions of nerve cells exist in a healthy person. For an ALS patient, it is reduced to few thousands. Alok's first symptoms were issue in holding a mic during conference, issues while holding a plate, issues while dressing up and slurred speech. Within few months, the disease started to arrest his hands movements, he started to limp and had difficulty in getting out of bed. By end of 2014, conditions were worse when even food intake was an issue and speech completely impacted. His bed had to be customized and expert nurses hired to support his movement and training to communicate. By mid 2015, he was completely bed-ridden. As the disease progressed, his communication got limited to first by finger movements, and today it is only by blinking that he can communicate.
As the disease progressed, it also took a financial toll on the family and drained all their resources and savings.
Alok has undergone two surgeries - the first one in year 2015 to help him breathe and the second one in 2016 for installing PEG tube in his stomach to help him feed directly through stomach.
Alok ji was such a jovial person and such a generous soul. He never thought twice before offering help to anyone, even if the person was not well known to him. It is really sad to see him in such a helpless situation.
Alok being a mentor and a guide for me, I have taken up the responsibility to raise funds for him and his family to provide financial support for next two months towards his medical expenses, which is approx 2.5 lakhs Indian Rupees (approx 3800 USD). The expenses are mainly towards the heavy doses of cocktail drugs (20K), 4 nurses (24/7 - 80 K), consumables like Diaper/Gauze/Gloves/Underpad/TT tube (30 K).
I will be running a half marathon (21.2 Kms) on 23rd July at Chennai. I am dedicating this run towards creating awareness about ALS and for raisings funds for Alok ji. Please donate generously for the cause.