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?
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 presented by SalemOaks, 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.
Episode 08 - We Need Decisions that Lead to Therapies for GPX4
Published on June 05, 2020
I am all-in for science. I actually get really excited when we discuss all the nerdy science details, but at the end of the day we want therapies and if this group cannot produce therapies, then we have failed in our responsibility. - Sanath
Episode 07 - Managing the Day With a Child With a Rare Disease
Published on May 22, 2020
“Too many things came at the same time. Sanath and I could not have a conversation about anything. We would talk two lines and then my mental capacity would be full. I can’t hear anymore. I am not able to process this.” Ramya
Episode 06 - The First GPX4 Conference Ever (Part 1)
Published on May 08, 2020
The GPX4 conference was scheduled for March 19 and all the arrangements were coming together. This was a critical milestone in their journey. On March 13, COVID began closing down the country. In fact, it had already hit Seattle especially hard.
Hear the podcast to know how they overcame this hurdle!
[Special Episode] Impact of COVID-19
Published on Apr 29, 2020
In this special COVID-19 episode, Sanath and Ramya talk about the unprecedented challenges they are facing in the constantly evolving pandemic situation. They discuss their fears as the research and potential trial medication comes to a grinding halt in the in the wake of the COVID-19.
Episode 5: Finding Help in the Land of (Intellectual) Giants
Published on Apr 25, 2020
"I was not scared. I was thrilled to be working on a problem this important."
Sanath is determined to find treatments for Baby Raghav’s rare disease. But the path to it is not easy.
Episode 4: Hope. Action. Strength. Hope.
Published on Apr 11, 2020
“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.”
Episode 3: Meet Raghav's Mom - Raising Rare: Parents quest to find a cure
Published on Mar 28, 2020
“The name Raising Rare means a lot to me. It conveys exactly the journey we are on. It is very close to my heart and I wanted to do a logo. I wanted to show that there are three of us on this journey, the two of us and Raghav.” Ramya (a.k.a. Raghav’s Mom)
Episode 2: We Are Not Alone on This Climb
Published on Mar 14, 2020
In this episode, we discuss how they got started attacking the problem and pulling together the resources they need to find a treatment and cure for Raghav. It is the kind of challenge that you cannot face by yourself. You need a community!
Episode 1: Connecting the Dots
Published on Feb 29, 2020
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.
Introduction
Published on: Feb 26, 2020
“I want to share my emotions, struggles, fears, wins and losses with you as we inch towards a treatment”