Having lost his four children to Gaucher’s disease in last 8 years, Sirajuddin battles to save his last surviving child

Mohd. Sirajuddin, 40, (9873536390) is a rickshaw puller living in Brahmapuri colony of Delhi (India) with his wife Anwari Begum, 35. However, in the last decade, he has spent most of his time battling to save his children from the hands of the deadly Guacher’s disease type-I, a rare genetic disorder characterized by high fever and bleeding. He has approached Advocate Ashok Agarwal of Social Jurist, member of the Delhi High Court-appointed monitoring committee on free treatment to EWS patients in private hospitals today. Seeing the urgency of the matter, Mr. Agarwal has suggested him to approach the Delhi government for any possible assistance before approaching the Hon’ble Delhi High Court. His family history is short and consistent. In 2005, he lost his 3-year old daughter, Gulnaaz, who had been admitted to Irwin Hospital. Only two years later, in 2007, Ghulam Mustafa, his 2 years and 9 months old son, died in Safdarjung Hospital. Roshan, his three year old daughter, was the third one to go, in 2009. She died at Kalawati Hosptial. Tamanna, his 11 months old infant-daughter, was the last, who died on May 4, 2012. Ironically, all the children were under treatment in government hospitals and these government hospitals were witness or rather mute spectators to the unfortunate deaths which resulted mainly from want of appropriate treatment, despite the patients being admitted to a government hospital, simply because Sirajuddin was not rich enough to bear the expenses. Mohd. Ahmed, his only surviving child, is 7 years old and presently undergoing treatment at AIIMS, New Delhi. He is in a highly critical state and weighs only 13 kgs. The department of Pediatrics, AIIMS, has estimated the cost of his treatment, Enzyme replacement therapy, at Rs. 4, 80, 000 (Four Lacs Eightly thousand rupees) per month. There is no provision for free treatment in normal course in AIIMS for this disease. Mohd. Sirajuddin has been running from pillar to post to save his last surviving child, Mohd. Ahmed. He has already been medically contra-advised against procreating more children in view of his genetic traits and those of his wife. This child is his last hope. He approached the Member of Parliament Shri Mahabal Mishra who was kind enough to forward his request on 31.05.2013 to the Prime Minister Relief Fund for aid in treatment. He has approached the Prime Minister’s Office twice ever since but has been turned away each time with a statement that he shall be informed via post in case his request is granted. With a large number of requests pending in bulky files, it may be just another case for them. For Sirajuddin, it is a do-or-die situation. Sirajuddin has approached the Directorate of Health Services, Government of Delhi, for assistance under Delhi Arogya Kosh scheme which provides financial assistance upto 5 lacs to EWS patients suffering from deadly diseases, subject to proper application and completion of documentary formalities, such as income certificate and proof of residence for last three years. He is hopeful of getting assistance from the same. However, one wonders how many people like Sirajuddin are capable of approaching the Delhi Government and furnishing all these documents? Does this scheme promise to cover all such EWS patients by providing them timely assistance to save their lives? And what about expenses beyond Rs. 5 lacs? Is it presumed that beyond that amount, the patient automatically becomes capable of bearing the expenses? In the present case, a 5 Lac-rupee assistance can only afford a one-month treatment to Sirajuddin’s child. What after that? Ashok Agarwal, Advocate M:- 9811101923 06.06.2013