Deoria (Uttar Pradesh): A couple from Uttar Pradesh's Deoria are trying to raise money for the treatment of their four-month-old son, Kavi, through crowdfunding.
Kavi is suffering from spinal muscular atrophy (SMA) and needs Zolgensma therapy.
The only medicine for this disease is an injection of gene therapy which costs Rs. 22 crores.
SMA is a type of genetic disease that attacks the muscles and nerves making it difficult to perform even basic movements like sitting, raising the head, drinking milk or even respiration.
Children suffering from SMA often need a ventilator for breathing.
READ: Rising cases of spinal muscular atrophy explained
The gene responsible for spinal muscular atrophy disease disrupts the production of proteins necessary for the smooth functioning of the nervous system in the body, resulting in nervous system damage and the death of infants. When the disease becomes severe, children die before they turn two years old.
The treatment of this disease is not yet available in India.
In the absence of treatment in India, the drug can be obtained from abroad for which Kavi's parents have turned to crowdfunding for financial help.
Kavi's parents have also appealed to Prime Minister Narendra Modi and Chief Minister Yogi Adityanath to help them treat their son's disease.
READ: Crowdfunding to the rescue of a Mumbai family
What is crowdfunding?
⦁ Crowdfunding is a new technique to collect funds with peoples’ support.
⦁ Mediums such as web platforms and social networking come in handy to collect funds.
⦁ It is used to take care of needs such as treatment of disease, education and business.
⦁ Apart from personal needs, this is also being used for public schemes, religious purposes and public development programmes.
⦁ People are asked to donate funds through social media platforms.
⦁ In order to crowdfund, the bank account details are shared on social media platforms.
People residing in any part of the world can send money to the beneficiaries through their account.
READ: Hyderabad parents take to crowdfunding for son's treatment
