An Appeal on Behalf of the Parents of Shaurya Singh
The following is a letter from the parents of Shaurya Singh. This young boy is suffering from a life threatening illness for which his parents are looking for a cure.
This is to inform you with immense grief that my 6 years son Shaurya Singh is in the grip of a life threatening rare disease “Hunter Syndrome” (MPS II) a part of Lysosomal Storage Disease. This has been established by Rajendra Institute of Medical Science (RIMS) Ranchi, Christian Medical College (CMC)Vellore and All India Institute of Medical Science (AIIMS) New Delhi. According to the doctors, this disease comes under the category of extremely rare diseases of the world . Its medicine is not available in India and it is only manufactured by a foreign company named “SHIRE PHARMACEUTICALS”, based at USA, the cost of which depends upon the body weight of the child, and is normally incurred in Crores.
According to the company the actual cost involved in the treatment of my son is approximately Rs.2 Crores annually,which is unaffordable by a middle class family like mine as I am working in a Private Telecom Company "Idea Cellular Ltd.". The same was informed to the Honorable Chief Minister of the State, State Health Secretary, Principle Secretary, Central Health Minister and also to our Honorable Prime Minister, Honorable President of India and also to my Company's Chairman though letters of appeal in 2014, but my petitions have gone unheard.
Letters of recommendation by Hon’ble Members of Parliament were sent to the Hon’ble Prime Minister of India and Union Health Minister but they replied that they do not have such policy to cover this disease neither with the State Govt. nor with the Union of India as of now. We have tried to reach to Government and the public through Electronic Media, Print Media & Social Media, but our efforts have not borne fruits up till now. This disease was first diagnosed in the year of 2014 and since then I have been running from pillar to post so that I get some relief from somewhere have knocked every possible doors for help so that I could reach to the medicine, but my petitions and appeals are going unheard by the government . I have left no stones unturned, but as it is unaffordable for me in my lifetime I am helpless.
There is an urgency to give him the Enzyme Replacement Therapy (ERT) immediately, in the absence of which his health is deteriorating day by day and I am watching my child slipping into the jaws of death every moment.
If there has not been a cure for this disease, it would have been easy for a father to compromise with his destiny but if there is cure available and a father is not reaching to it, one can understand the agony and the pain which he is undergoing and with this pain I come to you to do justice to my child who is suffering without any fault of his own and who has every right to live with a good health.
Details of Shaurya is as under :-
Name - Shaurya Singh.
Date of Birth - 16/11/2011
Age - 6 years
Sex - Male
Disease - Hunter Syndrome
Symptoms- (i) Breathing problem (ii) Frequent Cough & Cold (iii) Stiffness in joints.
Links & Media report on Shaurya :-
1. Save Little Shaurya - Facebook page
2. change.org - Petition to Prime Minister of India
Thanks & Regards,
Saurabh Kr. Singh.
F/O Shaurya Singh.
(A Hunter Syndrome)
Cell No. 9135004369/