Save 5yrs Shaurya, fighting with a life threatening rare disease HUNTER SYNDROME (MPS II).
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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 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 close to 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 but there is no such policy neither in State of Jharkhand nor with the Union of India and it will take many years to implement the rare disease policy. We have also filed a Writ Petition in Jharkhand High Court (WPC 689/2017) under Right to Life/ Right to health (Article 21) and it is also pending with the Jharkhand High Court.
Now We are looking for a crowd funding option to generate fund to start urgent treatment to save my son Shaurya, so that my child can survive.
Please donate here :-
Name- Shaurya Singh
Bank Name - IDBI Bank
A/C No.- 1523104000039057
IFSC Code- IBKL0001523
Place – Ranchi
State - Jharkhand
Watch & Share Shaurya on Facebook :- https://www.facebook.com/Save.Shaurya/
Kindly sign and share this message with everyone to reach this voice to our Hon’able Prime Minister to save Shaurya.
- Prime Minister of India
Save 5yr Shaurya, fighting with a life threatening rare disease HUNTER SYNDROME (MPS II).
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