“It’s exciting when we start an experimental therapy because we have all the hopes there. But it’s only time that can tell us what exactly will happen.”

Raising a child with a rare disease forces parents to do brand new things, to learn, and to grow personally. Sanath has built an elegant roadmap that guides the research plans for Raghav. But at some point, the rubber meets the road. 

In this episode, we discuss the heroic work that Sanath undertook to start a compassionate use study to look at whether an experimental drug could improve Raghav’s condition. 

He learned about the paperwork, ethics reviews, and time required to get such a study started. He found that not everything was in his control but that he could take charge of the things that are. 

Doing this work forced him to wrestle with his own emotions and grow stronger.

Hope. Action. Strength. Hope.

You can listen to Raising Rare directly or subscribe on iTunes, Spotify, Google Podcasts, YouTube, Facebook and more. You can follow us on twitter @Raising_Rare.

Sound design and music by Jacob Tompkins

Graphis by Ramya Ramaswamy