Save 6yrs Shaurya, fighting with a life threatening Rare Disease HUNTER SYNDROME (MPS II).
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I am proud to be a mother of 6 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 10-15 yrs and Shaurya is 6 yrs now. The medicine is still not started and the treatment is Enzyme Replacement Therapy (ERT).. Some foreign 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 and the Union of India has framed a "National Policy for the Treatment of Rare Disease" few months back after intervention of Hon'ble Delhi High Court. To implement this policy in every State is again a challenge and will take so much time but the time is running out and it is the real enemy of Shaurya. The condition of his health is deteriorating every time.
We have also filed a Writ Petition in Hon'ble Jharkhand High Court (WPC 689/2017) under Right to Life/ Right to health (Article 21) and it is also pending with the Hon'ble High Court.
I would request you all to please sign & share this petition again for proper and effective implementation of this policy and also to start immediate treatment to all the Shauryas of this county suffering from Rare Disease to save their life as every signature of this petition is reaching to our Hon'ble Prime Minister of India every time. We are looking for a crowd funding option to generate fund to start urgent treatment to save the life of my son Shaurya, so that my child can survive.
You may donate here :-
Name- Shaurya Singh
Bank Name - IDBI Bank
A/C No.- 1523104000039057
IFSC Code- IBKL0001523
Place – Ranchi
State - Jharkhand
Save Little Shaurya Facebook Page Link :- https://www.facebook.com/Save.Shaurya/
Kindly sign and share this message with everyone to reach this voice to our Hon’able Prime Minister of India to save the life of Shaurya.
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