For two years, we have shared the amazing story of Sanath, Ramya, and their baby son Raghav. They have started a non-profit, held a scientific conference, raised funds, started an experimental drug, and even commissioned research to screen over 4000 compounds for potential use. And they have learned how to manage Raghav’s daily routine.
All that changed in August. It was a normal day, maybe even a better morning than most. Raghav was taking a nap when they noticed something was wrong.
Something was very wrong.
Raghav was turning blue.
And real fear entered their lives for the first time. This fear has changed their perspective and once again shifted their priorities.
We have now completed our second season of Raising Rare. Given the changes in Raghav’s condition and in the life of Sanath and Ramya, we are going to take a break until January.