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Ayansh Madan Link Tree Profile
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Ayansh's CONDITION
My Nephew, Ayansh Madan in India, at a very early age, is diagnosed with SMA 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.
SMA affects 1 in 10,000 babies and is the #1 genetic cause of infant death worldwide.
I, as Ayansh's Uncle, want to give him, a lively and happy childhood, his best chance to not only survive but also live a fulfilled, long and normal life.
TREATMENT OPTIONS IN INDIA
As of now, there are no treatment options available in India for this invisible killer. Our only hope for Ayansh to have a normal life is to be able to import Zolgensma, a one-time gene replacement therapy, which in his current state could be a potential “cure”.
Zolgensma comes at a steep cost of INR 16 crores (USD $2.1 million).
Facebook
https://www.facebook.com/AyanshMadan_Fight_SMA-102673918537149
Instagram
https://www.instagram.com/ayanshmadan_fight_sma
WHAT YOU CAN DO TO HELP
Donate money. Please donate with all your heart so we can save our Ayansh'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 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 post-natal care.
Ayansh's CONDITION
My Nephew, Ayansh Madan in India, at a very early age, is diagnosed with SMA 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.
SMA affects 1 in 10,000 babies and is the #1 genetic cause of infant death worldwide.
I, as Ayansh's Uncle, want to give him, a lively and happy childhood, his best chance to not only survive but also live a fulfilled, long and normal life.
TREATMENT OPTIONS IN INDIA
As of now, there are no treatment options available in India for this invisible killer. Our only hope for Ayansh to have a normal life is to be able to import Zolgensma, a one-time gene replacement therapy, which in his current state could be a potential “cure”.
Zolgensma comes at a steep cost of INR 16 crores (USD $2.1 million).
https://www.facebook.com/AyanshMadan_Fight_SMA-102673918537149
https://www.instagram.com/ayanshmadan_fight_sma
WHAT YOU CAN DO TO HELP
Donate money. Please donate with all your heart so we can save our Ayansh'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 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 post-natal care.
Organizer and beneficiary
Ayansh Madan
Beneficiary