Sonu Sood, Farah Khan appeal for donations for 16-month-old Ayansh’s gene therapy drug
Mumbai, July 23, 2021
Actor Sonu Sood and filmmaker Farah Khan have appealed to their fans to donate funds for Ayansh Madan, a 16-month-old child in Gurgaon, who is suffering from spinal muscular atrophy (SMA), a rare genetic disease, which can be treated with a drug costing about Rs 16 crore.
“The cost of the drug that he needs is so ginormous that we can only achieve it if we all come together. Only we can help give Ayansh a new life," Sood said.
“Despite being 16-months-old, he can't walk or stand. He can only consume liquids and lie down on the bed. I request all of you to join me and help save little Ayansh,” Farah Khan said.
SMA is a rare genetic disease in which one defective gene causes muscle weakness and degenerates its normal functions. It primarily affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. The disorder is found in one of every 10,000 children and nearly 800 children are suffering from SMA in India.
Ayansh's condition came to light when his mother found out that he wasn't able to move or do any activity kids of his age normally did, a press release from Ketto, the crowdfunding platform, said
"At first, she assumed it must be a learning issue but as time passed, Ayansh’s development kept deteriorating. From swallowing milk to breathing, every basic life-sustaining action seemed impossible for Ayansh to perform," the release said.
“Parveen and I were blessed with parenthood after 12 years of our marriage, the birth of Ayansh, was one of the most gratifying moments of our lives. However little did we know our happiness will be short-lived. Ayansh was six months old when I started noticing that he is not showing the developing milestones like other healthy babies. My concern started to grow when I noticed he is not able to crawl or turn sides while sleeping, he is unable to hold a grip on his toys, not able to swallow solid food,” said Vandana Madan, Ayansh mother.
The couple decided to seek an expert opinion and visited AIIMS hospital for the consultation. Looking at Ayansh’s condition the doctors performed preliminary tests to confirm the cause of the disease. After several tests, doctors confirmed that Ayansh is suffering from SMA, the only cure for which is Zolgensma - a gene therapy drug manufactured by Novartis. The drug therapy will change the genetic composition and synthesize survival motor neuron (SMN) protein.
In SMA, a body does not produce SMN protein, which causes SMA disease. The drug is a single dose injection, which is only produced in the USA and European countries. It is considered to be the most expensive treatment in the world. The injection costs around 2.1 million dollars or Rs 16 crore, excluding GST and import duties.
“We were devastated to know that our son is suffering from a rare genetic disorder and the only cure is the world's most expensive drug costing around Rs. 16 crores. As parents, we left no stone unturned to arrange money for our son’s treatment but Rs. 16 crore is a huge amount, hence we decided to seek support from the crowd and embrace the power of crowdfunding on Ketto. So far, we have raised over Rs. 2.13 crore but we still have a long way to go and the time is slipping off our hands, therefore I urge people to support and donate for my son’s treatment,” appealed Ayansh’s mother.