Save 7yrs Shaurya, fighting with a life threatening Rare Disease HUNTER SYNDROME (MPS II).

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I am proud to be a mother of 7 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 in the year 2014. His health is deteriorating day by day. His life expectancy is very low and the average age in this disease is only 10-12 yrs and Shaurya is 7 yrs now. The medicine (ERT) is still not started by the Government after several request and apples. Some foreign drug companies are selling the medicine at very high cost i.e Rs. 2 Crore approx, which is unaffordable for us in our life time. If the drug is not given to my child on time it will be very difficult to save his life. I need the help from Government to provide this treatment. After several court cases in India the Union of India has framed a "National Policy for the Treatment of Rare Disease in June 2017 after intervention of Hon'ble Delhi High Court. We also filed case in 2016 in Jharkhand High Court to start the treatment & finally Hon'ble Jharkhand High Court ordered the Govt. to start the treatment under National Policy. But Union of India is denying to provide even after Contempt of Court in Jharkhand High Court. Govt. of India also files a petition in Supreme Court for not providing the medicine and again takes their petition back from Supreme Court in Nov'2018. They again files a Review Petition in Feb;2019 and says that they can't provide costly treatment to any of the APL patient and the policy was made only for BPL patients. They also tooks time of 9 months from Hon'ble court to keep the policy under abeyance to reframe the National Policy. 

Sir I again wanted to urge you only one thing that the innocent child has already suffered a lot since 2014 but my petition and apples are unheard every time. We have not left any stone upturned to save our child but the time is running out which is the real enemy of Shaurya. We can not see his pain anymore, the condition of his health will deteriorate very fast if it is not provided him on time. 

Save Little Shaurya_ Facebook Page Link :- https://www.facebook.com/Save.Shaurya/

I request everyone to sign and share this petition with everyone/ group to reach this voice to our Hon’able Prime Minister of India to save the life of my little Shaurya.



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