Scores of Gaucher disease patients silently marched to Prime Minister Narendra Modi's residence on Saturday demanding a national policy to provide free treatment to people suffering from such rare diseases.
The walk, organized by Lysosomal Storage Disorder Support Society (LSDSS) on the occasion of first International Gaucher day, saw participation from patients along with their parents holding placards and banners.
Present among them was 7-year-old Mohammed Ahmed along with his parents Sirajuddin and Anwari Begum, first patient to be awarded free treatment at AIIMS following a verdict from the High Court in April this year.
Standing with distended abdomen, swollen lymph nodes, thin limbs and black-brown skin pigmentation, Ahmed is the last surviving child of the couple. His four siblings (three boys and one girl) have already lost their battle to the rare genetic disease.
Diagnosed with Gaucher's as an infant, Ahmed suffered from fever, his abdomen started swelling and his weight came down to mere 13 kgs at the age of six.
"With each passing day, Ahmed's condition was deteriorating fast. He needed ERT (Enzyme Replacement Therapy), the only available treatment costing around Rs 5-6 lakh every month for the rest of his life. I cannot think of losing my fifth child," said Sirajuddin, a rickshaw puller.