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Help Vedika fight SMA
VEDIKA'S CONDITION :
On behalf of Sourabh and Sneha
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. We, as Vedika’s parents, want to give her, a lively and happy child, her best chance to not only survive, but also live a fulfilled, long and normal life.
HOW CAN YOU HELP
Since we have a huge amount to gather in just a month, very little time, please contribute and share with your network and spread the word as much as possible. It would mean the world to us.
TREATMENT OPTIONS IN INDIA:
We are extremely fortunate to have her diagnosis early, because it gives us a chance to fight this before her symptoms become severe. However, as of now, there is no treatment options available in India for this invisible killer.
Our only hope for Vedika to have a normal life is to be able to import Zolgensma from USA, 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).
More about SMA :
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.
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