In July 2020, baby Janish was diagnosed with Spinal Muscular Atrophy Type-1 (SMA), a rare and fatal genetic disorder that affects 1 in every 10,000 babies. It is the number one cause of infant deaths worldwide, and children affected by this disorder don’t usually make it past the age of 2. The only known cure is a very expensive drug that no normal person can afford, and Janish’s parents are struggling to save him.
Janish was born a healthy baby, through normal delivery. However, as he started to grow, his parents, Naveen and Jyothi, had begun to notice that their baby hadn't gained any neck control. Seeing that even at 5.5 months old he wasn’t able to hold his head up, his parents consulted a pediatrician.
After MRI scans, they found that Janish hadn’t achieved his motor milestones, his parents were referred to other hospitals for further testing. During the pandemic the availability of doctors was scarce, so they had to shuffle from one hospital to another in vain. They were finally able to consult a doctor for genetic studies at Manipal, where they sent Janish’s blood sample for testing.
“Two weeks later, we got a call from the hospital informing us that the reports were in, and we needed to come and meet the doctor immediately. That surprised me and I got really worried. Why would the doctor ask us to meet with them unless it is something serious? My husband quickly looked up the medical terms mentioned in the reports. That is how we learned about SMA, and when we realized that Janish had it, we were shocked. My mind went blank and I couldn’t even grasp the situation..” - Jyothi, mother.
Janish’s body is missing a protein carrying gene called SMN1, which has caused weakness in his nerve cells. Because of this condition, his muscles have become increasingly weak. He cannot swallow any food, breathe properly, stand, sit or even lift anything. He has to be fed liquid food by a tube connected to his stomach and most of the time, he has to be on artificial respiratory support to breathe.
Now baby Janish has completed 15 months, and without medical intervention, gradually his organs will stop working. SMA is a fatal disease with only one known cure, a gene therapy using a drug called ‘Zolgensma’. It is a one-time dosage, imported all the way from the US, and comes at the steep price of INR 16 crores ($2.1M). But, Naveen and Jyothi cannot bear such an exorbitant expense.
“We are from a middle class family, and 16 crore rupees is an amount that we couldn’t even imagine! We can never earn such a hefty amount in our whole lifetime. As a parent, I don’t want to see my baby struggle. Please help me save my son..” - Naveen
Janish is a strong little boy and has been fighting hard against this genetic disease. But he is running short of time. He needs this drug within the next three months, or his life will be in grave danger and his parents could lose their baby boy. Naveen and Jyothi want to give their baby a long, healthy and normal life. Janish’s sister, Aditri, is waiting for the day she will be able to play with her baby brother again.
Janish and his family need your support and help. Naveen and Jyothi would be extremely grateful if you could contribute any amount in your capacity, no matter how big or small, to save their baby boy. Please donate generously, and help this baby beat SMA Type-1. Together, we can give Janish a new life!