For a nine-month-old child, the road ahead should be measured in first words, first steps and the small discoveries of infancy. But for the daughter of a Delhi University faculty member, the immediate concern is a rare genetic disorder and a treatment bill running into crores. Now, in a significant gesture of institutional support, the university has approved Rs 17 crore in financial assistance for her treatment.
The decision follows months of efforts by colleagues, teachers and well-wishers who came together to raise money for the child’s medical care. Diagnosed with Spinal Muscular Atrophy (SMA) Type-II, a rare genetic disorder affecting muscle strength and movement, the infant requires specialised treatment at an age when timely medical intervention is particularly important.
The university’s School of Open Learning (SOL), where the child’s parent is employed as a faculty member, took the initiative to mobilise institutional support. SOL Director Payal Mago first placed the proposal before the school’s Governing Body, which approved it. Subsequently, Vice-Chancellor Yogesh Singh constituted a special committee to examine the request. After deliberations on its technical aspects, the committee unanimously approved the financial assistance, according to a university statement.
The university’s decision came after an extensive fundraising effort had already brought together contributions from different quarters. Representatives of the SOL Academic Association worked to mobilise financial assistance through crowdfunding platforms and government support mechanisms.
The campaign raised Rs 3.11 crore, with contributions from Tata Trust, the chief minister’s relief fund, crowdfunding platforms such as Impact Guru, Milaap, Ketto, and GoFundMe, and the SOL Teacher Relief Fund and the non-academic staff association. However, the amount remained insufficient to meet the estimated treatment expenses.
With the financial gap persisting, Mago approached the vice-chancellor seeking further assistance. The university’s approval of Rs 17 crore has now provided a significant institutional response to the family’s appeal.
SMA is a genetic condition caused by abnormalities in the SMN1 gene, which affects the production of a protein essential for motor neuron survival. These nerve cells control voluntary muscle movements. Their progressive deterioration can lead to muscle weakness and difficulties with activities such as sitting, standing, swallowing, and in some cases, breathing.
In Type-II SMA, symptoms generally become apparent between six and 18 months of age. Children with the condition may learn to sit independently but often have difficulty standing and walking. Although treatments are now available to modify the disease course, early intervention remains important. Gene replacement therapy is one treatment option for eligible young children.
The financial burden associated with such therapies is substantial. The Union government, in its National Policy for Rare Diseases, 2021, provides for financial assistance of up to Rs 50 lakh for eligible patients through designated Centres of Excellence.
However, in certain cases, treatment expenses can far exceed this assistance.