Your vote matters – A simple, no-cost click can help Vihaan & all the babies Fighting SMA!

Your vote matters – A simple, no-cost click can help Vihaan & all the babies Fighting SMA!

13 April 2022
Signatures: 479Next Goal: 500
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Why this petition matters

Started by Meenakshi Akulwar

Hello friends! 

We all can WALK but 16-month old Vihaan Akulwar can’t. Vihaan has been recently diagnosed with Spinal Muscular Atrophy, (SMA type 2). This brave kid is unable to move his lower limbs due to this disorder. (reports attached)

There are many babies like Vihaan who have the right to lead a normal life – Walk, run, play. But this genetic disorder is leading him and his SMA friends towards gradual muscle weakness and deterioration. 

Any solutions? Yes - Zolgensma! 

Thankfully, a medicine called Zolgensma is there that can help Vihaan and his other SMA friends regain their abilities. This drug is produced by Novartis Pharmaceuticals. The drug literally adds the missing gene SMN1 back to the patient.

By when can this drug be given – By the end of May 2022. Thereafter, all hopes of Vihaan being able to walk again would cease forever.

So what is the problem? The huge cost – INR 16 Crores for one dose! The drug has to be imported from the US since it is not manufactured in India.

His parents are well-educated, alright! But arranging a whopping INR 16 Crores over such a short term is not an easy task. They are trying all ways and means permissible – Crowd-funding, donations, help from near and dear ones. All of it is in progress. A very less amount has accumulated so far, but the hope is high!

Any hopes for a cheaper medicine?  Of course yes, in many countries across the world, the same medicine is available at much lower costs. Govt intervention becomes essential to give relief to patients. With your support we want to urge our government too, to arrange for this medicine at an affordable rates. 

How can we all help – Sign this petition – Besides any monetary support, you can also extend your support to Vihaan and his SMA friends by simply signing this petition. Each single click will add a pillar to our demand to the government for an affordable cost of the drug Zolgensma.  Signing this petition is absolutely FREE and takes just a min of yours.

Sign the petition and ensure a lease of life for Vihaan and kids with rare diseases

More about SMA:

·        SMA progression and time to raise funds:  SMA is a slow progressive genetic disorder. The medicine Zolgensma is effective only if it is given before the child turns two years old.  

·        Pressure on parents –It is very natural that parents face multiple pressures. Along with the pressure to deal with child facing a rare genetic disorder, there are financial pressures, professional challenges, fear of not being able to get the drug etc.

·        No data on kids suffering from SMA is available with the Govt. (State/ Central) in India. SMA is included in National Policy for Rare Disease that only allows crowdfunding for financial help in such cases but lacks a definite approach. (Link to policy document)

·        How many kids suffer from SMA?  Nearly 800 kids across India are presently suffering from SMA. Spinal Muscular Atrophy (SMA) is a deadly disease that affects approximately 1 out of 7744 children in India.

Remember, Vihaan and his SMA friends seek your generous support. This petition will not only enable Vihaan but will also help other kids to get access to treatment for SMA. So vote upon this e-petition and show your solidarity with Vihaan. YOUR VOTE COUNTS.

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Signatures: 479Next Goal: 500
Support now