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Bring SMA Medicine India on an Affordable cost

This petition had 6,391 supporters


My Nephew Master. Jewel Roshan is suffering from a rare genetic disease SMA, Spinal Muscular Atrophy (Type II).

            SMA is a disease that robs people's physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. 

SMA is the number one genetic cause of infant mortality.

There are three types of SMA:

        Type I is the most severe form of SMA. Children with type I have limited movement, can’t sit without support, and have trouble breathing, feeding and swallowing. Symptoms begin within months after birth. Many children with type I do not live past age 2.
       Type II is an intermediate form of SMA. Children with this type may sit without support at some point but cannot walk on their own. Symptoms typically start between 6 and 18 months of age. Depending on the severity of symptoms, children with type II may have a normal life span. 
       Type III is a milder form of SMA. 

Our kid is 11 years old now, and he attained till creeping by his own. He is not able to get into a sitting position stand or walk and needs help to do basic things. Now the upper limb functions is also affected. On my sister's and family's rigorous efforts and physio therapy, disease is not progressing. 

Though it is a rare disease, hundreds of families are suffering from this deadly disease in kerala itself and there was no hope for cure. Now after lots of clinical trials, one medicine, SPINRAZA introduced in US and its cost would be more than 7 crore per year in Indian Rupee as the cost is 5000 times of its actual market price as it is a medicine for rarest disease. It cannot be afforded by an average  Indian family.

So, We request the government of India, to make the medicine available in India at an affordable rate so that not even a single family denied the treatment of SMA because economic status. 



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