Bhagalpur: A teacher in Bhagalpur district, Ghanshyam Kumar, has appealed directly to Prime Minister Narendra Modi for a life-or-death decision after his two sons were denied essential medication for a serious condition. In a deeply emotional letter dated February 19, Kumar, a resident of Kadwa Diara in Navgachiya, pleaded for permission for his family to die peacefully after being unable to afford the critical treatment required for his children’s rare genetic disorder, Duchenne Muscular Dystrophy (DMD).
Kumar’s sons, Animesh Aman, 15, and Anurag Anand, 10, have both been diagnosed with DMD, a progressive condition that weakens the muscles and eventually leads to severe disability. Despite both children being registered on the government’s Rare Disease Portal for over two years, the family has been unable to secure the necessary funds for the PTC Translara medication, which the children urgently need to slow the progression of the disease.
The medicine, approved by the FDA in 2014, is already being used in 33 countries, including in India, where it was trialled in 2017. However, Kumar states that when he contacted AIIMS Delhi, he was informed that the treatment would only be available once the Health Department provided the necessary funding.
“The condition of my children is worsening every day, and as a father, I am helpless,” Kumar wrote. “I implore the government to provide the necessary funds for their treatment, or grant us permission to die with dignity through euthanasia.”
