PremiumWhen Pavitra Sirolikar discovered that her toddler had a rare genetic disorder, she began searching for a medicine that could slow its debilitating effects. Her efforts have helped seven children in India access a treatment that would otherwise cost up to Rs 4 crore a yearPavitra Sirolikar's son was diagnosed with a rare genetic condition called Allan-Herndon-Dudley syndrome (AHDS) that can lead to problems with speech and mobility, including an inability to walk or sit independently. (Representational image generated using AI)5 min readNov 6, 2026 12:20 PM IST First published on: Nov 6, 2026 at 12:13 PM ISTAs soon as her 20-month-old son was diagnosed with a rare thyroid disorder, Pavitra Sirolikar started researching about the condition and ways in which she could help him. She came to know of a medicine — first synthesised in 1953, but never approved in India — that could potentially reduce the debilitating effect of the disease.She imported a month’s worth of medicine from Germany — under the country’s personal use exemptions — at a cost of nearly Rs 13 lakh. She knew this was not sustainable; her son would need the medicine as long as he lives.© The Indian Express Pvt LtdAnonna Dutt is a Principal Correspondent who writes primarily on health at the Indian Express. She r... Read More# Express Premium ShareWhatsapptwitterFacebook