Spinal Muscular Atrophy, a rare disease; the child may die before the age of 2, Supreme Court comes to the rescue

The Supreme Court comes to the rescue of an 11-month-old baby affected by a rare disease . The Supreme Court intervened to arrange the enormous amount required for the treatment of a child affected by the rare disease Spinal Muscular Atrophy . Zolgensma gene therapy is the only way to save the child's life. This will cost ₹14.2 crore. The child's father is an Air Force officer. The parents filed a petition in court, pointing out that the expense was beyond their means and requesting government assistance.


Finding that the child's parents had no other means to raise the ₹14 crore required for treatment, the Supreme Court issued a notice to the central government seeking a response on the matter. The Supreme Court intervened urgently in this matter after it became clear that the child would not survive beyond two years due to the disease. The petition was filed citing Article 21 of the Constitution, which grants the right to life to all citizens. After considering the petition, Justices Surya Kant and Ujjal Bhuyan observed that the matter was serious. The court issued notices to the central government, the Ministry of Defence, the Chief of Air Staff, and the Army Hospital to respond.