Introduction:

The Madhya Pradesh High Court has intervened in a matter concerning the life and medical treatment of a three-year-old girl suffering from Spinal Muscular Atrophy (SMA) Type-2, a rare and serious medical condition requiring extremely expensive treatment. In A v. Union of India, W.P. No. 10849 of 2026, a Single Bench of Justice Sandeep N. Bhatt called upon the Union Government and the State Government to explore all possible avenues of financial assistance for the child’s treatment.

The proceedings were initiated by the child’s parents, who approached the High Court seeking financial assistance from the Government for a life-saving injection and related treatment. According to the case placed before the Court, the overall treatment was expected to cost approximately ₹9.5 crore, making it virtually impossible for the family to bear the entire expense without substantial institutional or governmental assistance.

Spinal Muscular Atrophy is a rare genetic disorder affecting motor neurons and can result in progressive muscle weakness and serious impairment of essential bodily functions. In a young child suffering from SMA Type-2, timely access to specialised treatment can be critical. The extraordinary cost involved in treatment therefore formed the central humanitarian concern before the High Court.

The parents had already undertaken extensive crowdfunding efforts and had succeeded in collecting a substantial sum through assistance from various institutions and organisations. During the proceedings, it was brought to the Court’s attention that approximately ₹8 crore had already been collected through crowdfunding and other institutional efforts. The Union Government had also sanctioned financial assistance of ₹50 lakh.

Despite these efforts, a substantial financial gap remained. The High Court noted that approximately ₹1 crore was still required after taking into account the amount sanctioned by the Government and the funds collected through crowdfunding. The Court therefore considered whether further assistance could be arranged through governmental or institutional sources so that treatment could commence at the earliest.

The case also involved the role of AIIMS, New Delhi, which was stated to be treating the child and functioning as the nodal institution for providing treatment. The Court had earlier directed the Union Government, the State Government and AIIMS Delhi to discuss and ascertain what assistance could be extended to the child on humanitarian grounds.

The proceedings consequently went beyond an ordinary dispute concerning entitlement to a particular government benefit. The Court was confronted with the pressing question of how the available governmental and institutional mechanisms could be utilised in exceptional circumstances involving a critically ill child and an extraordinarily expensive treatment.

The petitioners were represented by Advocate Chanchal Gupta, while Advocate Anuj Bhargava appeared for the Union Government and Government Advocate Bhagyashree Gupta represented the State.

The High Court’s intervention reflects the broader constitutional concern surrounding access to healthcare, particularly where the life of a child is at stake and the family lacks the financial capacity to independently arrange treatment costing several crores of rupees. At the same time, the Court was required to operate within the existing governmental schemes and institutional mechanisms rather than simply directing an unlimited expenditure from public funds.

The Court therefore adopted a practical and humanitarian approach, directing the concerned authorities to examine what further assistance could be made available and requiring AIIMS to place relevant information regarding the child’s medical condition and treatment before the Court.

The proceedings also demonstrate the significance of judicial monitoring in exceptional medical cases. Rather than treating the matter solely as a claim for monetary assistance, the Court sought coordination among the Union Government, State Government, AIIMS and other organisations capable of contributing towards the treatment.

Arguments of the Parties:

The petition was brought by the parents of the three-year-old child, who sought financial assistance from the Union Government for her life-saving treatment. Their principal concern was that the child was suffering from SMA Type-2 and required treatment at an extraordinarily high cost, reportedly around ₹9 crore for the life-saving injection, with the overall treatment expenses estimated at approximately ₹9.5 crore.

The parents submitted that they had made extensive efforts to raise the required amount through crowdfunding. The financial support received from different institutions and members of the public had resulted in the collection of a substantial amount. Nevertheless, the funds raised were insufficient to meet the total treatment cost.

The parents therefore sought governmental intervention and financial assistance so that the treatment could be commenced without further delay. Their plea was essentially based upon the urgency of the child’s medical condition and the extraordinary nature of the financial burden.

The petitioners’ concern was not merely that the treatment was expensive, but that delay could have serious consequences for a child suffering from a rare medical condition. The parents therefore sought a coordinated response from the authorities rather than being required to continue independently raising an amount that was beyond their ordinary financial means.

During the proceedings, the parents’ side also raised concerns regarding the progress of treatment at AIIMS Delhi. When counsel appearing for AIIMS sought additional time to file a response, the parents’ counsel opposed the request and submitted that despite the substantial amount already collected, treatment had not commenced.

The petitioners therefore sought judicial intervention to ensure that the medical process was not unnecessarily delayed while the financial arrangements were being worked out. Their position was that the authorities should act with urgency because the matter concerned the health and life of a very young child.

The Union Government, represented by Advocate Anuj Bhargava, participated in the proceedings concerning the possible financial assistance available to the child. The Court had specifically directed the Union Government to examine what benefits could be extended on humanitarian grounds.

It was brought before the Court that the Union Government had already sanctioned ₹50 lakh towards assistance. This demonstrated that governmental support had been made available, although the amount was considerably lower than the total financial requirement.

The State Government was also directed to examine whether it could provide assistance. Government Advocate Bhagyashree Gupta represented the State before the Court. The High Court subsequently observed that the State Government should also explore whether some financial assistance could be arranged in view of the exceptional circumstances.

AIIMS Delhi occupied a particularly important position in the proceedings because it was already involved in the child’s treatment and was described as a nodal agency for providing treatment for the rare condition. Counsel appearing for AIIMS informed the Court that the child was already receiving treatment from the institution.

The Court nevertheless required AIIMS to provide a clearer picture regarding the child’s medical condition and the proposed treatment. It directed AIIMS to file a short reply concerning the child’s condition and treatment, particularly in light of the concerns raised by the parents regarding the commencement of treatment.

The request for additional time by AIIMS to submit its response became an important procedural development. The parents’ counsel opposed the request, arguing that time was significant because the child was suffering from a serious medical condition and that, despite the funds already raised, the treatment had allegedly not commenced.

The Court consequently granted AIIMS a limited period to place its response on record. The approach reflected the Court’s attempt to balance the need for complete medical information with the urgency of the child’s condition.

The financial position placed before the Court also evolved during the hearings. Initially, the parents had sought assistance for treatment involving a life-saving injection costing approximately ₹9 crore. Subsequently, the Court was informed that a substantial amount had already been collected, approximating ₹7.5 crore, including the ₹50 lakh sanctioned by the Union Government. The overall treatment cost, however, was stated to be around ₹9.5 crore.

The Court therefore identified a remaining financial requirement of approximately ₹1 crore. This gap became the immediate focus of the Court’s observations during the latest hearing.

Rather than placing the entire remaining burden upon a single authority, the Court called upon the Government and other organisations to explore possible avenues of assistance. The Court observed that additional contributions could potentially be received from institutions or organisations and that the State Government could also explore mechanisms for providing financial assistance.

The submissions from the parties thus placed three interconnected issues before the Court: the child’s urgent medical condition, the substantial amount still required for treatment, and the need for coordination between governmental and medical institutions.

The parents sought immediate assistance and treatment. The Union Government had already contributed a significant amount through the sanctioned assistance and was asked to examine whether further benefits were available. The State Government was asked to explore possible financial support. AIIMS, meanwhile, was required to clarify the child’s medical condition and treatment plan.

The case therefore required the Court to consider the humanitarian circumstances without losing sight of the institutional limitations governing public expenditure and medical treatment.

Court’s Judgment:

Justice Sandeep N. Bhatt of the Madhya Pradesh High Court adopted a humanitarian and facilitative approach while dealing with the petition concerning the three-year-old child suffering from SMA Type-2.

The Court’s primary concern was ensuring that all possible avenues of assistance were explored so that the child’s treatment could commence at the earliest possible opportunity. The Court noted that the overall treatment requirement was extraordinarily high and that, despite considerable efforts by the family and other institutions, a financial gap remained.

The Court took note of the substantial funds already collected through crowdfunding and institutional assistance. It was informed that approximately ₹8 crore had been collected through various sources, including the amount of ₹50 lakh sanctioned by the Government.

Even after accounting for these contributions, approximately ₹1 crore was still required to meet the overall treatment cost. The Court therefore observed that the Government should consider whether exceptional assistance could be made available in light of the special circumstances of the case.

The Court specifically expressed the expectation that the Government could explore whether cases of this nature could be considered under an exceptional mechanism for providing further financial assistance. The observation was significant because it recognised that an extraordinary medical condition requiring treatment worth several crores may not always fit neatly within ordinary assistance schemes.

The Court also turned its attention towards the State Government. It observed that the State authorities could explore whether some financial assistance could be provided to the child.

This direction did not amount to a final declaration that the Government was legally bound to finance the entire treatment. Instead, the Court called upon the authorities to actively explore available avenues and exceptional mechanisms in view of the humanitarian circumstances.

The Court’s approach was therefore one of judicial facilitation rather than judicial substitution of governmental policy.

The Court also recognised the importance of additional assistance from private and institutional sources. Since a significant amount had already been raised through crowdfunding, the Court observed that further funds might be received from other organisations or institutions.

This approach acknowledged the collective nature of the effort that had already gone into raising money for the child’s treatment. The Court did not treat governmental assistance as the sole possible source of funding but encouraged every available avenue to be explored.

At the centre of the proceedings was also the question of treatment itself. AIIMS Delhi was already involved in the child’s medical care and was identified as a nodal agency for the treatment of the rare disease.

The Court had earlier directed the Union Government, State Government and AIIMS Delhi to discuss what benefits could be extended to the child on humanitarian grounds. This indicated that the Court wanted the various authorities to coordinate rather than approach the issue in isolation.

When AIIMS sought time to file its response regarding the child’s condition and treatment, the parents opposed the request on the ground that treatment had allegedly not been initiated despite substantial funds having been collected.

The Court granted AIIMS a week’s time to file its reply. This direction was important because the Court needed medical information before determining what further steps could appropriately be taken.

The Court therefore directed AIIMS to place a short reply concerning the condition of the child and the treatment proposed or being provided. Such information would allow the Court to understand the medical urgency and the precise nature of the financial requirement.

The Court’s observations demonstrate that the case was being treated as one involving exceptional humanitarian circumstances. The child was only three years old and was suffering from a rare disease. The financial requirement was extraordinarily high, while the parents had already undertaken significant efforts to raise the required funds.

The Court’s statement that approximately ₹1 crore remained to be arranged illustrates the practical problem before it. The authorities were not being asked to finance the entire treatment from the beginning; rather, the question was whether the remaining gap could be bridged through additional governmental or institutional assistance.

The Court therefore expected that by the next date, additional funds might also be received from other organisations and institutions. This reflected an understanding that treatment could become possible if the remaining financial gap was closed.

The proceedings also raise broader questions concerning access to expensive treatment for rare diseases. Modern medical treatment for certain rare conditions can involve costs that are completely beyond the financial capacity of ordinary families. In such cases, crowdfunding may provide substantial assistance, but it may still leave a significant shortfall.

The High Court’s intervention shows the role that constitutional courts can play in facilitating communication between families and public institutions in exceptional circumstances. The Court can call upon authorities to examine available schemes, consider humanitarian assistance and provide information necessary for making informed decisions.

At the same time, the Court did not pronounce a general rule that every patient requiring expensive treatment must receive the entire cost from the Government. The observations were carefully connected with the special facts before the Court, including the age of the child, the rare medical condition, the extraordinary treatment cost and the substantial amount already collected.

The Court’s use of the expression “exceptional case” is particularly noteworthy. It suggests that the Court was conscious of the need to distinguish extraordinary situations from ordinary claims for financial assistance.

The proceedings also underscore the importance of timely medical decision-making. When treatment is highly time-sensitive, delay caused by administrative uncertainty can become a serious concern. By requiring AIIMS to file a prompt response, the Court sought to ensure that the medical aspects of the case were clearly placed before it.

The Court’s direction also allowed the Government to consider possible financial assistance without prematurely determining the precise legal source of such assistance. The State and Central Governments were effectively asked to examine what could be done within the available framework, including whether exceptional assistance was possible.

The judgment therefore reflects a pragmatic judicial approach. Instead of approaching the matter solely through rigid entitlement, the Court sought to bring together the available governmental resources, medical expertise and institutional support.

The humanitarian dimension of the case was especially significant. The Court was dealing with a three-year-old child, not merely an adult claimant seeking reimbursement of medical expenses. The child’s age and serious medical condition added urgency to the proceedings.

The Court’s observation that treatment should begin “at the earliest” captures the underlying concern. In cases involving rare and serious diseases, time may have an important bearing on the effectiveness and outcome of treatment.

The Court consequently continued its supervisory role by requiring the concerned authorities to provide information and explore possible financial assistance.

The case also demonstrates the importance of transparency concerning the status of funds already collected. Since approximately ₹8 crore had been raised and the total treatment requirement was around ₹9.5 crore, the Court was able to identify the remaining gap with greater precision.

The Court’s intervention thus transformed the broad request for assistance into a more concrete exercise: determining the exact medical requirement, identifying the treatment pathway and finding possible sources for the remaining amount.

The eventual outcome at this stage was not a final direction awarding the entire remaining ₹1 crore. Instead, the Court directed the authorities to explore further assistance and required AIIMS to submit relevant medical information.

The proceedings therefore remained focused on securing a viable pathway towards treatment.

The decision in A v. Union of India is significant beyond the individual circumstances of the child because it highlights the difficulties faced by families dealing with rare diseases where treatment costs are exceptionally high. It also demonstrates how constitutional courts may facilitate coordination between governmental agencies, medical institutions and other organisations when a vulnerable person’s life and health are at stake.

The Court’s approach was compassionate but institutionally measured. It did not simply order public funds to be released without consideration of the applicable mechanisms. Instead, it called upon the authorities to explore available options, consider exceptional assistance and provide the Court with relevant medical information.

The case remains particularly significant because the financial requirement was already substantially met through public generosity and government assistance, leaving a comparatively smaller but still enormous shortfall of approximately ₹1 crore.

The High Court’s observations therefore convey a clear message: were the circumstances are exceptional and the life of a young child i