On 19-12-19, I lost my 22-year-old son due to a very rare disease in the world. My 20 year old son is also suffering from the same “Glycogen storage disorder-II (Pompe disease)”. Several tests were done but due to lack of adequate expertise in India, the diagnosis of the disease has not been done due to which proper diagnosis has been delayed. My son cannot get up without help, nor can he sit nor
sleep, his respiratory system is getting affected every day, which makes him difficult to breathe. Finally, in August 2020, after the "Whole genome sequencing test", the disease was diagnosed with a disease called “Glycogen storage disorder-II”. According to doctors, “Enzyme replacement therapy (ERT)” is the only option in the world for the treatment of this disease, as per the advice of doctors, this ERT should be started as soon as possible in patients. If this treatment is not started, there is a high risk of failure of the patient's lungs and respiratory system. Treatment of ERT can provide relief to the patient from respiratory tract and lung problems which will increase his life expectancy. In ERT treatment, these enzymes are given to the patient twice a month. The cost of these enzymes is 21,72,515 / - per month and 2,60,70,180 / - per year for long life or till come new medicine. Therefore, I am seeking all possible help for treatment, but I find myself helpless. I humbly request you to please help save the life of my only child. I will always be grateful to you for your help in saving my son's life. I fully expect positive support from you. Champalal Jasmatiya (father)
Mobile # 9929227580
Please find below details of bank account for Donate/Contribute to save lives fe of a young boy-
Bank name - HDFC
Account no. - 50100272392271
Account holder - Lalit Soni
Branch - Barmer
IFSC code - HDFC0001840
Mobile - 6376538250
