Several SMA families in India including ours were given the only option to crowdfund for the high end SMA treatments for our children using crowdfunding platforms. Having attempted the same, we have realised that this method has low to nil success rates owing to the increasing number of cases coming forward in India. Moreover the treatment for SMA with the drug Risdiplam is for lifelong, making this an unsustainable solutions for families who are already dealing with their ailing children, unless we get strong support from the Health Ministry both at Central and State levels and also Corporates to support this as a healthcare subject that has the capacity to save lacs of lives in India.
Hence we plead to the Government of India and the Corporates to kindly come forward to support the life saving treatments of our children in the Country and help spread awareness on prevention of such rare genetic disorders by adoption of a mandatory genetic test prior to conception of children.
Thanks to a few Corporates we have been able to raise funds as a community. We are hoping many more Corporates and Government will come forward in days to come and support this cause to save lives and the SMA families from the misery of seeing their children gradually slip away to their silent , suffering - laden ends.
