Save my 7 years Son Arnesh who fights against life threatening rare disease DMD
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1) My 7 years old son Arnesh is suffering from a rarest of rare disorder called Duchenne Muscular Dystrophy in short (DMD), This is one of the rarest disorders in the DMD patients in the world with a confirmed mutation, deletion of exon 50 amenable to exon skipping (exon 51). Estimates say that there are around 2000 people in the world who are affected by this type of DMD with confirmed mutation of exon 50 deletion amenable to exon skipping (exon 51), most of the patients do not live to see their teen years.
2) There is hope for survival of these patients, a drug namely Exondys 51 (Eteplirsen) injection manufactured by Sarepta Therapautics, U.S.A. and marked through Clinigen Company U.K are available.Its applicable only 13% population of DMD in world and my son Arnesh is lucky enough that medicine has been invented in USA so far as 87% DMD patients till now no medicine yet been invented in the world.But unfortunately the cost of the injection is beyond the financial capacity of a common man.
3) Many countries have a policy for the treatment of these patient.
4) In India the policy called “National Policy Treatment for Rare disease 2017” are framed by Ministry of Health & Family Welfare Govt. of India in 2017 under the direction of Hon'ble Delhi High Court.My son disease are also covered in said policy.I made effort to get treatment to my son under this policy, unfortunately the treatment not initiated. I made an appeal to Hon’ble High Court at Calcutta and the Court pleased to passed an order dated 12.10.2018 in favour of my son and directed to the State Govt. of West Bengal and the Govt. of India to initiate treatment of Arnesh within 8 weeks, unfortunately the treatment not yet initiated and once again we made appeal to Hon’ble court at Calcutta for contempt in connection of order dated 12.10.2018 passed by the Justice Patherya.
5) This petition on change.org initiated with
A. Appeal to Ministry of Health & Family Welfare Govt. of India as well as State Govt. of West Bengal to subsidize or free the treatment for DMD with confirmed mutation deletion of Exon 50 amenable to exon skipping (Exon 51 Skipping) by bringing the medicine Exondys 51 (eteplirsen) patients in India and save Arnesh’s life.
B. Appeal to the drug company to initiate therapy to my son on charity basis till the court case is pending.Because it’s our believe that the Government will sure implement the National Policy Treatment of Rare Disease 2017 in India to relief such type of disorder i.e. DMD and other rare diseases in India.
6) We witness every day Arnesh struggling with his life and battling with this disorder. Being a father, I can’t see him struggling for his survival.I do not want to lose my son. It is needless to mention here that my son Arnesh is aware about his diseases and he always willing to take food supplement as medicine assuming that it will cure his disease. His vision is to become a scientist and develop a medicine in affordable cost.
7) In order to save Arnesh life, he has to undergo therapy with Exondys 51 (eteplirsen). If the drug is not given to my son Arnesh on time, it will very difficult to save his life.
8) from a year my son’s health has deteriorated drastically, we need as much support as we can get on our petition to ensure that Minister of Health & Family Welfare Govt. of India as well as State Govt. of West Bengal and drug manufacturer company viz. Sarepta Therapeutics do not ignore our appeal.
Pls sign my petition and share it with your friends.
Thanks in advance for support.
Indrajeet Kumar Shaw
Mobile No - +918017975332
for clarification or support if any.
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