Without World’s Costliest SMA Drug (Rs 16 crore), My Son Will Not Survive

By   |  Published: 15th Jul 2021  4:55 pm

As I sat on the creaky hospital bed with my 1-year-old Ayansh in my arms, tears began to slip from my eyes.

Tears of fear and anguish, tears of helplessness and guilt, and finally, tears of shame.

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All the pent up sorrow and despair burst through my eyes like a broken dam as I trembled at the thought of losing my Ayansh to his rare genetic disorder.

A disorder whose only cure is a drug worth {(160000000)}, nothing less nothing more.

Drained out from the day’s happenings, I lay Ayansh on the bed to sleep and took a long and hard look at my baby, for I knew, any day could be his last.

His rare and deadly disorder is so devastating that if my husband and I don’t come up with the money for its cure, we’ll lose him forever.

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The disorder that my Ayansh is suffering from is called Spinal Muscular Atrophy (SMA), something that leads to loss of nerve cells and muscle growth and normally affects 1 in every 10,000 babies.

For us, this is a soul-defeating piece of news as the only cure for it is a drug named Zolgensma which can only be imported from the U.S.

Ayansh’s condition came to light when I found out that he wasn’t able to move or do any activity kids of his age normally did. At first, I thought it might have just been a learning issue, but as time went on, his development kept deteriorating.

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From swallowing milk to breathing, every basic life-sustaining action seemed impossible for my son to perform.

As Ayansh was born after 12 years of marriage, I couldn’t think anything worse could happen to us as the long wait itself was excruciatingly painful.

But it did. Destiny cursed my son with the cruellest of ailments, the cure for which will take more than a lifetime for us to afford.

Coming from a lower-middle-class background, my husband works as an employee at TCS and I toil as a housewife. We sail through life with whatever little money we have and make ends meet.

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But arranging an amount as ginormous as {(160000000)} is way out of any working-class man’s league, let alone our already struggling family.

“Ayansh’s state is extremely fragile. If he doesn’t get the drug soon, I’m afraid he won’t be able to survive the disease,” these words from the doctors always felt like daggers piercing our very being,

Ayansh has yet to experience everything that life has to offer. He has yet to see the beauty and persevere through the ugly.

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Therefore, I urge you to help us. We know the amount is huge but it is no way more hefty and precious than my son’s life. Even if each one of you does your part by donating, we can save Ayansh from his ailment once and for all.

Thus, please donate for my son and help give him a chance at life. Every bit counts.


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