My name is Rayapudi Praveen and I am here to raise funds for my daughter ELLEN who is 14 months old. Ellen has been diagnosed with Spinal Muscular Atrophy (SMA) type 1 - a rare disease that affects almost 1 in 10,000 babies worldwide.


This disease progresses rapidly and in most cases kills the child before they turn 2 years old.


Treatment Options: Zolgensma Gene Therapy is a potential cure for SMA for children below two years of age and it has to be imported from the USA. Baby Ellen needs it as soon as possible to save her life. Zolgensma Gene Therapy is a one-time gene replacement therapy, and it needs to be imported. Called the world's costliest drug, it costs 16 crore rupees and is more expensive than any family can afford alone.

Until now for her treatments and medications, we've spent about Rs.3,00,000. which we arranged from savings & loans. But In the next few days, we need Rs.16,00,00,000 (Rs.16-crore) more for the Zolgensma Gene Therapy treatment.