My daughter from a very young age has been suffering and the only way to help her live past two years is a Life-Saving Drug called "Zolgensma".
Zolgensma comes at a steep cost of INR 16 crores (USD $2.1 million).
SMA affects 1 in 10,000 babies and is the #1 genetic cause of infant death worldwide.
WHAT YOU CAN DO TO HELP
- Donate money. Please donate with your heart so we can save our Anvi's life.
- Contribute your time. We are in for the long haul in our fight against this deadly disease. The best course of action is to raise awareness and get the necessary infrastructure set up in India. Only time and continuous lobbying will contribute to a long-lasting change.
- Spread the word. Healthy parents could have a genetically affected baby. Genetic testing is in a nascent state in India, with limited labs and clinics available for diagnosis. Tell others about genetic testing, so this becomes a common practice as it is in most western countries like the USA and Canada, where genetic screening is part of post-natal care.