Earlier this year, when most of us were speculating who the prospective PM of the country would be, when the ICC Cricket World Cup was all set to grip us, when Prime Time debates were busy discussing everything unprime, somewhere in a remote corner of Uttar Pradesh’s Mathura, an aggrieved man was trying to get his voice heard and land some help, during the most testing times of his life.
Meet Amitabh Saxena. A man in his forties who lives in Mathura and has a family of three. Nothing about this family would have been special some years back. The Saxena trio – Mr. Saxena, his wife Neetu Saxena and their only son, Abhishek Saxena – were leading an average middle-class life. The child went to school, while the parents worked in their capacity to run their household, and make both ends meet. The evening chai time of the family – which most of us take for granted – was routine for them too. They too celebrated festivals and met neighbours to exchange pleasantries. In other words, they were leading a life most of us do. Except, destiny had a piece of brutal news to break to them.
Approximately a decade ago, a rare muscular and neural disease struck the Saxena husband and wife. In a moment, the ‘average middle-class life’ was thrown into ruins. Mr. Saxena was diagnosed with a rare disease called Muscular Dystrophy while Mrs. Saxena had been struck with Cerebellar Atrophy.
As with most rare diseases, the names and descriptions are difficult for the layman to understand. However, to speak in simple terms, both diseases have a rare occurrence (one in a million), and they are characterised by gradual weakening of the muscles and nerves, leading to impairment of all physical activities, and both require care and support. These conditions are incurable. But, regular physiotherapy can help.
All of this, however, is just one part of the problem.
Owing to the rare nature of the diseases, the treatment, as you must have guessed, is rare too. While trying to save their lives, Mr. Saxena tried every hospital and every doctor possible. Since it can not be cured, the duo began looking for a treatment that could atleast sustain their lives. However, disappointment awaited them even at this juncture.
No medical insurance covers their condition. In a bid to save himself, the ‘breadwinner’ of the family banked upon his savings and continued with the medicines. As he was on the verge of exhausting all his personal savings, he sacrificed his self-respect and tried the last resort of seeking help from the government. The UP government’s Relief Fund, the PM Relief Fund, and the Ayushman Bharat are some of the schemes, under which they could have been the apt beneficiaries of financial assistance. Unfortunately, they have not received any aid so far.
The Ayushman Bharat scheme is also known as Pradhan Mantri Jan Arogya Yojana (PMJAY) or National Health Protection Scheme; it is a centrally sponsored scheme that was launched in 2018, under the Ayushman Bharat Mission in Ministry Of Health And Family Welfare in India.
A long series of events have unfolded since the appeals were made to the Chief Minister’s Fund for help. Unfortunately, none of the appeals has been realised. When his hopes to get help became as low as the chances of his survival, he turned to social media around April 2019. He raised a fund request on milaap. Other fundraisers on the site have raised the target amount, but this man’s appeals for financial help through crowdsourcing, have not got the least amount of attention. The amount collected so far is an embarrassing fraction of the target amount of 4 Lacs. He has listed the number of appeals with their reference number on his Facebook page.
Their story is totally verified. Along with a friend, I have been trying to get the best assistance to them. However, that has not been enough. Corruption at lower levels, abysmally slow speed of file processing, unconcerned media and a general culture of apathy have all been impediments to their fundamental right to life. If governance means turning a deaf ear to the needy, this couple has seen the ‘best’ example of governance.
What makes their matter worse, is the fact that their electricity supply has been cut for non-payment of bills. It is important for Mrs. Neetu Saxena to stay cool to prevent her nerves from contracting further. No electricity increases her vulnerability for a stroke. Money is an urgent requirement for them. Additionally, Abhishek, their only son, has stopped going to school. He needs to stay home to assist his parents. Moreover, school fees are a luxury they can not afford. They have no resources whatsoever to get any money to sustain their lives, while the duo loses their physical mobility with time.
We, however, can be the much-needed source of hope for these fellow members of our society.
I am sure the ‘awaaz’ of today’s Youth agrees, that we need to fight against such mockeries of governance, to bring justice to someone while they are alive, to ensure that politics does not meddle with someone’s basic right to healthcare and a good life. I urge my readers to kindly pay heed to this man’s story. Make the government hear the voice that has not yet learnt the art of making noise on social media. Make Amitabh Saxena’s life count!
This, my dear readers, would not only be an opportunity to help but to transform the voice of individual despair to a call of the masses. I shall not comment ‘this could have been you’. But can we extend a helping hand to ensure that three lives – which rightfully deserve to live – do get to live to the fullest? No, may it never be you. But right now, someone IS losing the optimism to live. And THAT is a reason sufficient enough for us to scream, shout, get our voices heard and allow the Saxena family to get their lives back on track.
Let’s make it happen? Shall we?
PS: Helping the Saxena family in any manner possible would be great. While the couple awaits getting financial assistance, crowdfunding is one way to help them out. If you can donate even INR 100 (One hundred only), it would sustain their hopes to survive. Please visit: https://milaap.org/fundraisers/support-neetu to make a donation or even a bank transfer. Their need is urgent.
Some people have contributed to their capacity and they can never be thanked enough for this. A sincere thank you to all of them.
*Feature Image for representational purposes only.