11-month-old girl's plea to SC, needs Rs 14 crore injection to save her life, SC seeks response from government

The petition states that the treatment of this extremely dangerous disease is possible only with Zolgensma gene therapy, whose injection costs 14 crore, 20 lakh. It is not possible for them to raise so much money for treatment. Anyway, the child has very little time.

Spinal Muscular Atrophy: A petition has been filed in the Supreme Court to save the life of an 11-month-old girl suffering from a rare disease named Spinal Muscular Atrophy (SMA) Type 1. The petition, filed by the girl's mother, has sought the government to provide necessary financial assistance for her treatment.

The petition said that the treatment of this extremely dangerous disease can only be done by Zolgensma gene therapy, whose injection costs 14 crore, 20 lakhs. It is not possible for them to raise so much money for treatment. Anyway, the child has very little time.

If he does not get treatment now, his life will not survive after just a few months (two years of age). The court has issued notices to the Central Government, Ministry of Defense, Chief of Air Staff, Army Hospital in the matter.

This demand in the petition

The petition said that Jayashvi's father is in the Air Force and due to the government's policy, he cannot take financial help from people working in the Ministry of Defense without permission.

The parents of the petitioner have been pleading for help from the concerned departments and the government but they have not received any help so far. The petition cites Article 14 (equality before law) and Article 21 (right to life) of the Constitution.

According to the petitioner, the court should direct the central government to release funds of Rs 14.20 crore for gene therapy for the treatment of the girl. The government should give its approval to export the injection and get it administered to the girl immediately. Along with this, the court should direct the Ministry of Defense and the Chief Air Staff to send messages to the soldiers for crowd funding.

The court considered it a serious matter.

The matter came up before a bench comprising Justices Surya Kant and Ujjwal Bhuyan in the Supreme Court today. Senior advocate Gopal Shankar Narayanan appeared on behalf of the petitioner. According to the girl's parents, they did not charge fees for this advocacy. "It is certainly a serious and rare case. The court issued notices to the Central Government, Ministry of Defense, Chief of Air Staff, Army Hospital. The court has also asked the Attorney General to give his opinion in this. The next hearing will be on January 2.