A Message From
Vihaan Akulwar, born in Dec 2020, has been diagnosed with a rare
(1 in 10,000) genetic disorder - Spinal Muscular Atrophy (SMA) at the age of 14 months.
SMA is a very rare neuromuscular disorder in infants which results in the loss of motor neurons and progressive muscle wasting. It limits infants' motor functions & movement and is lethal if left untreated. One of the initial symptoms of this disorder is the progressive weakness of muscles in the arms, legs, and respiratory organs. Currently, Vihaan is not able to sit by himself, crawl or stand as expected for his age. This weakness is due to the lack of protein required by motor nerve cells. He is missing the SMN1 gene and cannot produce the necessary amount of protein. Without this gene & protein, his nerve cells will slowly die, and he will lose muscle control progressively. If not treated soon, we will lose our precious Vihaan.
The only thing that can bring Vihaan closer to normal life is “ZOLGENSMA,” which is the ONLY gene therapy medicine available and approved by FDA, and it is ONLY available for patients under 2 years of age. Vihaan needs this gene therapy treatment within 3 months to stop any further muscle deterioration. Currently, Vihaan has limited movement in the legs, and administering this drug as soon as possible will help him lead a decent life and chance to walk again. He will be able to go to school, study, spend quality time with family, and play with his friends just like any other kid would.
We are trying our best, but Zolgensma is the world’s most expensive drug and costs about $2.1 million, 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 in such a short time frame.
Vihaan’s hope of survival and leading a decent life rest in your willingness to support. I appeal to your kind & generous heart to please donate any funds you can afford.
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 reach our goal as soon as possible to give Vihaan a fighting chance.
Thank you for your kindness and generosity.
- Meghana Relkuntwar