Child’s family seeks urgent government funding for life-saving bone marrow transplant under National Policy for Rare Diseases 2021
A three-year-old girl diagnosed with LRBA deficiency, a rare and life-threatening genetic immune disorder, has approached the Delhi High Court seeking financial assistance of nearly ₹40 lakh for a critical bone marrow transplant. The petition argues that despite being eligible under the National Policy for Rare Diseases (NPRD), 2021, government authorities have failed to release the required funds, putting the child’s life at serious risk.
According to the plea filed through her father, doctors have warned that any further delay in treatment could significantly reduce the chances of a successful transplant and may lead to irreversible health complications.
Family Seeks Immediate Release of Funds for Treatment
The petition requests the Delhi High Court to direct the Ministry of Health and Family Welfare to sanction and release the full cost of the child’s haploidentical bone marrow transplant and post-operative treatment directly to Apollo Hospital, Chennai, where the procedure has been recommended.
The family has also sought urgent judicial intervention to ensure that treatment begins without further delay.
Child Suffered Repeated Health Crises Since Infancy
As per the petition, the girl was born in September 2022 and began experiencing recurring fever episodes and a sharp decline in haemoglobin levels within months of birth. Between April and October 2023, she reportedly underwent multiple blood and platelet transfusions as her condition continued to deteriorate.
The child was initially evaluated at AIIMS Delhi, where doctors were unable to identify the exact cause of her illness. Subsequent tests reportedly indicated elevated arsenic and silver levels, leading to a provisional diagnosis of toxicity. However, further medical evaluations at CMC Vellore later ruled out this diagnosis and raised suspicions of Autoimmune Lymphoproliferative Syndrome (ALPS).
Whole Genome Test Revealed Rare Genetic Disorder
Seeking a definitive diagnosis, the family consulted specialists in Mumbai, who recommended a Whole Genome Test. The report, received in July 2025, allegedly confirmed that the child was suffering from LRBA (Lipopolysaccharide-Responsive Beige-Like Anchor Protein) deficiency, a rare genetic condition caused by a compound heterozygous mutation.
The disorder severely impacts the body’s immune regulation system, leaving patients vulnerable to recurrent infections, autoimmune complications, and potentially life-threatening health conditions.
Bone Marrow Transplant Only Curative Option
Following the diagnosis, the child was assessed by specialists at Apollo Hospital, Chennai, in March 2026. Doctors reportedly concluded that a bone marrow transplant is the only curative treatment available.
As no fully matched donor could be found, the hospital recommended a haploidentical transplant using the child’s father as a half-matched donor. The estimated cost of the treatment and related procedures has been pegged at approximately ₹40 lakh.
The petition states that Apollo Hospital possesses the specialised expertise and infrastructure required to perform such a complex transplant procedure.
AIIMS Acknowledged Lack of Treatment Facilities
The plea further relies on a prescription issued by AIIMS Delhi in April 2026, which allegedly acknowledged that the institution lacks the facilities and resources necessary to provide the specialised treatment required by the child.
According to the petitioner, this demonstrates that the life-saving treatment is unavailable in government hospitals, making state-funded treatment at a private facility essential.
The family also cited an independent assessment by Apollo Hospital, Delhi, which estimated the transplant cost at around ₹36 lakh.
Family Exhausted Savings, Seeks Government Support
The child’s father has claimed that he has exhausted his financial resources on medical consultations, diagnostic tests, and preliminary treatment. As a result, the family is no longer in a position to bear the substantial cost of the transplant.
Invoking the National Policy for Rare Diseases, 2021, the petition argues that patients suffering from rare diseases are entitled to government financial assistance. It notes that while the policy initially provided support of up to ₹20 lakh, the amount was increased to ₹50 lakh through an Office Memorandum issued by the Ministry of Health and Family Welfare in May 2022.
The family submitted representations to the authorities on June 1, 2026, seeking release of funds, but allegedly received no response.
Constitutional Rights and Supreme Court Judgments Cited
The petitioner has argued that the failure to provide financial assistance violates Articles 14 and 21 of the Constitution of India. The plea states that the Right to Life includes access to timely and affordable medical treatment and that the State cannot avoid its responsibility when necessary treatment is unavailable in public healthcare institutions.
The petition further emphasizes that public health is a constitutional obligation of the State. It contends that when government hospitals lack the required infrastructure, authorities must fund treatment at suitable private medical institutions.
To strengthen its case, the family has relied on the Supreme Court’s landmark judgment in Paschim Banga Khet Mazdoor Samity vs State of West Bengal (1996), which held that providing adequate medical facilities is a constitutional duty of the State. The plea also references previous Supreme Court and Delhi High Court rulings concerning financial assistance for children suffering from rare diseases.
Delay Could Have Life-Threatening Consequences
According to the petition, any further delay in arranging the bone marrow transplant could lead to progressive deterioration of the child’s condition, multiple organ failure, and a significantly reduced chance of successful treatment.
The matter is expected to raise important questions regarding the implementation of India’s rare disease policy and access to life-saving healthcare for patients requiring specialised treatment unavailable in government medical institutions.
