Please help Vihaan with life saving gene
Donation protected
Vihaan Akulwar, my 15-month-old nephew, has been diagnosed with a rare (1 in 10,000) genetic disorder - Spinal Muscular Atrophy (SMA2). SMA affects the nervous system and muscle control of the body. If untreated, his quality of life will significantly deteriorate and may result in fatality. He will not be able to do things that most have taken for granted - sitting, walking and even breathing! Vihaan's only hope is a drug called “Zolgensma '' which needs to be administered before he turns 2 yrs. While Zolgensma is a miracle drug, at its current price of $2.1 Million, it is out of reach of Vihaan’s family even if they exhaust all their funds. This plea for help is difficult and humbling, but we believe this will give Vihaan a fighting chance against SMA!
More about Vihaan and his battle with SMA
I am Meghana, Vihaan’s aunt, helping my brother Vikrant & sister-in-law Meenakshi who live in India, to raise funds to save our little prince Vihaan. Recently, Vihaan celebrated his 1st birthday with his family and friends, which was an incredibly proud milestone for all of us. Little did we know then that our lives would be turned upside down within the next two months. Vihaan was diagnosed with SMA in February of 2022, which was confirmed with genetic testing.
SMA results in the loss of motor neurons and progressive muscle wasting. One of the initial symptoms of this disorder is the weakness of muscles in the arms, legs and respiratory organs. Currently, Vihaan is not able to sit, crawl or stand without support. He is missing the SMN1 gene and cannot produce the necessary amount of protein required by motor nerve cells. Without this gene and the protein, his nerve cells will slowly die, and he will lose muscle control progressively. If not treated soon, it breaks our heart to say that we might lose our precious Vihaan.
What is Zolgensma
The only thing that can bring him closer to normal life is “ZOLGENSMA,” which is the only gene therapy medicine available and approved by the FDA and available for patients under two years of age. Vihaan needs this gene therapy treatment soon to stop any further muscle deterioration. We are encouraged by success stories where the drug has shown positive results for all SMA patients who received it early. The effectiveness of this drug depends on how soon the drug is administered since once a particular nerve cell dies, the damage is almost irreversible to that part of the body. Hence we need to start the treatment as soon as possible.
Why are we fundraising
We have exhausted all our avenues to raise funds, but Zolgensma is one of the world’s most expensive drugs and costs about $2.1 million USD and is not covered by insurance in India. It is impossible for my family to raise such a large sum by ourselves without your help within this short amount of time. Vihaan’s hope of survival and leading a decent life rests on your willingness to support this cause! Payments from gofundme will be made to the pharmaceutical company or their authorized subsidiary in lieu of purchasing this life-saving treatment. We also have started crowdfunding in India, and we plan to close the fundraisers across all platforms as soon as we reach the goal to buy the drug Zolgensma.
How can you help
We believe your generous contributions to the fundraiser and sharing Vihaan’s story with your family and friends will help us get the medicine for Vihaan at the earliest. Every single contribution will bring Vihaan closer to achieving a new lease on life and will help him win in his fight against SMA. Vihaan cannot stand on his own feet yet, but he has not given up! He stands tall in the face of SMA, eagerly waiting for your help and blessings.
Thank you for your generosity and for keeping Vihaan in your thoughts and prayers!
You can follow updates on Vihaan’s condition using the following social media links.
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Organizer
Meghana Relkuntwar
Organizer
Sammamish, WA