Our daughter, Vedika, at a very early age of 8 months, is diagnosed with SMA Type 1, one of the most severe, early-onset forms of Spinal Muscular Atrophy. The disorder attacks the baby’s nerves and muscles, and as it progresses, makes it extremely difficult for them to carry out basic activities like sit up, lift their head, swallow milk, and even breathe.
SMA affects 1 in 10,000 babies, and is the #1 genetic cause of infant death worldwide.
TREATMENT OPTIONS IN INDIA:
As of now, there are no treatment options available in India for this invisible killer.
We are extremely fortunate to have her diagnosis early, because it gives us a chance to fight this before her symptoms become severe. Our only hope for Vedika to have a normal life is to be able to import Zolgensma, a one-time gene replacement therapy, which in her current state could be a potential “cure”.
Zolgensma comes at a steep cost of INR 16 crores (USD $2.1 million).
WHAT YOU CAN DO TO HELP
- Donate money. Please donate with your heart so we can save our Vedika’ 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 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 USA and Canada, where genetic screening is part of the post-natal care.