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Raising Rare - Raising Rare EPISODE 1, 29th February 2020
Connecting the Dots of Life

Connecting the Dots of Life

“…you can’t connect the dots looking forward; you can only connect them looking backward. So, you have to trust that the dots will somehow connect in your future.” – Steve Jobs

Sanath and Ramya met in grade school. Before they were married, they had all sorts of experiences that prepared them for the unexpected – a son with an ultra-rare developmental disorder. His name is Raghav. 

Raghav was born with a missense genetic variant of GPX4 resulting in a disorder known as Sedaghatian-type Spondyl Metaphyseal Dysplasia (SSMD). But Sanath and Ramya didn’t even know the exact diagnosis until Raghav’s first birthday. Even when they did know the cause, they still were without a clear picture of what would happen next.

In this episode, Sanath introduces us to his family and reflects on the stories of all the dots that they are connecting as they begin the search for a treatment.

A search that no one knows where it will take them or what dots they will experience. 

And they invite you to come along.  

We think you will find it remarkable.