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Petitioning Prime Minister of India

Save 5yrs Shaurya, fighting with a life threatening rare disease HUNTER SYNDROME (MPS II).


I am proud to be a mother of 5 years Shaurya, but dying by knowing that my kid is growing with a life threatening rare disease Hunter Syndrome (MPS II). This disease has been diagnosed by experts in CMC Vellore and AIIMS, New Delhi, India. He has enlarged liver & spleen. His joints are getting stiffer. He has frequent cough and cold and running nose, breathing problem. He can't speak clearly. His body growth is not normal. His health is deteriorating day by day. His life expectancy is very low. The medicine of this disease is not available in India and the treatment is Enzyme Replacement Therapy. Some foreign companies are selling the medicine at very high cost. It is not affordable for me to buy the medicine in my whole life. If the drug is not given to my child on time it will be very difficult to save his life. I need government help to provide this treatment as soon as possible, so that my child can survive. 

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