There are many dangerous diseases in the world whose treatment is very expensive. One such disease is Spinal Muscular Atrophy (SMA), the treatment for which costs around 100 million rupees. A child named Vedansh from Maharashtra, aged 22 months, suffers from this illness. Financing such expensive treatment was an insurmountable task for his parents. However, social media influencer Mayuresh Gudj and his team spent about a month raising funds among people by asking for help.
They attracted public attention by standing with posters on the streets, as well as near temples and during religious events. Soon, this campaign received significant support: Anant Ambani, who was returning after visiting the Ganesh temple, noticed the poster, stopped his car, and promised to cover the full cost of the child's treatment.
What is SMA, where muscles become weak?
Spinal Muscular Atrophy (SMA) is a serious neuromuscular disease. It affects nerve cells responsible for muscle movement in the body. These cells are necessary for performing actions such as walking, sitting, swallowing, and breathing. The disease arises from a mutation in the SMN1 gene. When this gene malfunctions, the body is unable to produce sufficient amounts of the SMN protein, which is critical for motor neurons.
What are the symptoms of SMA?
Among the signs of the disease are increased muscle weakness, general body relaxation, difficulties with sitting, standing, or walking, problems maintaining balance, and swallowing difficulties.
Why is the treatment so expensive?
SMA treatment requires the use of special gene therapies. These drugs are not yet available in India. Developing gene therapy is also an extremely costly process that requires huge investments in research. Since cases of this disease are rare, drug production is also limited, leading to the drug price rising to tens of millions of rupees.