@drharshvardhan Save My 7-year-old Son Arnesh who is Battling Rare Disease DMD #SaveArnesh

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My 7 year old son Arnesh has a very rare disorder called Duchenne Muscular Dystrophy (DMD in short). This genetic condition affects approximately 1 in 3,500 male births, worldwide. We see Arnesh struggle every single day to battle this disorder. Being a father, I it is very difficult for me to see him struggling for survival.

Most of the patients do not live to see their teen years. Fortunately, there is hope for survival of these patients.

A drug named Exondys 51 (Eteplirsen) injection manufactured in the USA is available, and applicable only for 13% patients affected by DMD. Arnesh is lucky enough that medicine is available for him. Unfortunately the cost of the injection is beyond the financial capacity of a common man. This is why I need your support.

Most countries have subsidised treatment for this disease, but this is not the case in India. Under the National Policy Treatment for Rare Disease 2017, my son is covered for this type of treatment. However, the treatment was not initiated despite several appeals in the court.

The Indian Minister of Health and Family Welfare, Dr. Harsh Vardhan, has the power to change this and subsidise treatment for this rare disease.  

I am asking for:

  1. The Ministry to subsidise or provide free treatment for DMD by bringing the medicine Exondys 51 (eteplirsen) for patients in India and save Arnesh’s life.
  2. Appeal to the drug company to initiate therapy to my son on charity basis till the court case is pending.

I do not want to lose my son. Without this medicine, each is a new battle. He dreams of becoming a scientist and develop a medicine in affordable cost when he grows up. If the drug is not given to Arnesh on time, it will very difficult to save his life.

We need as much support as we can get on our petition to ensure that Dr. Harsh Vardhan doesn’t ignore our demand. Please sign my petition and share it with your friends. Together, we can #SaveArnesh.