The story is a collaboration between Asadur Rahman on Ground in Katihar, Bihar and Gouri Joshi based in Delhi
Sitting as I gasped for breath after a 10-minute workout in the open gym, I looked at the little boys of my colony playing football. My body was tired, but the brain lapped up the scene and started processing thoughts at Godspeed. From thinking about the Indian sports scenario, to football memories at school, to cherishing the innocence of childhood; I looked at the young boys adoringly.
My gaze was broken by a WhatsApp ting ting, a message in Hindi. It was long, but I read it. It spoke of a 10 year boy in Bihar who suffers from a rare disease-his bones break on mere touch or even without it. I flinched and narrowed my eyes as I pictured the scene. The son of a laborer couple. Doctors perplexed and inefficient-‘unable’ to treat the young, faultless life. A life which deserved to achieve and enjoy-but young Adarsh’s life is far from ideal. He withers with pain, death would seem so much simpler in such a circumstance.
The evening air turned dense-Delhi pollution turned its worst in winter nights. I prepared to get up when suddenly a group of boys and girls my age emerged from behind the tree, smoking and giggling that even nonsmokers had bad lungs. I stomped home in disgust.
The heated over processor placed in my skull produced jumbled thoughts at unmappable speed. A monologue surfaced-Adarsh’s bones, smoke, smog, poverty. If doctors could not devise a cure-maybe this disease was rare and indeed beyond scientific research. What could I do about it? I had non-medical in my senior secondary. I turned to Google. Bone diseases. Rare Bone Diseases. Adarsh’s symptoms were closest to Osteoporosis.
Even the net stood by the Bihar doctors-I could find no cure or permanent solution online. But after hours of reading I figured out that rare diseases are contributions of genetic disorders and alterations in the DNA. These complications arise because of an unhealthy lifestyle dependent on drugs and tobacco, and adulterated food. They also arise because of insufficient diet, malnutrition in the mother and unsafe, unsupervised birth conditions.
If the child does not get sufficient Vitamin D and calcium intake, the problem is sure to occur. How laborers afford to feed their children milk when they seldom get chapatis, is the government’s concern. The largest democracy. The most vibrant youth population. 6.3 lakh aspirants for AIPMT each year. And yet, none affirms that Adarsh will walk again, live freely with the zeal of 10 yr old like him. It is our job to bring this issue to light. But let this not remain a written piece-jobs yearn to be done.