“Our little boy Raghav is a happy kid with a contagious smile. Behind his smile is a very serious medical condition if left untreated can be fatal. But here’s the catch there is no treatment.”

Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. What would your reaction be? Where would you go for help? Who would you call?  There are no instructions for a young mother and father to get through the first night, let alone the lifetime of their child. Their life has been changed forever, just not in the way they expected it would.

On Raising Rare we are bringing you the story of a young father whose son has an ultra rare disorder known as Sedaghatian type Spondylometaphyseal Dysplasia, or SSMD. Each episode we will find out what is going on in the life of Sanath and his son Raghav.