Episode 14

Published on:

24th Jul 2021

The Disorder Dads (Part 1): Bo Bigelow's Story

We are starting a unique 3-part series about a couple of rare disease Dads finding themselves doing things they never expected.  The Disorder Film Festival and the Disorder Channel are two of the most powerful rare disease storytelling platforms on the planet.  You might think that a few high-powered media moguls are behind it all.

Not quite.

On today’s show, we are talking to Bo Bigelow whose daughter Tess has Hao-Fountain Syndrome.   The thing is, there was no such thing as Hao-Fountain Syndrome a decade ago.  All they knew was that their sweet daughter seemed to be falling behind. Something was wrong. 

As Bo transitioned from commuting 4 hours a day to a work-from-home Dad, he began to see Tess’s struggles firsthand.  This began a search for what was going on.  They were unable to get a correct diagnosis based simply on symptoms. They had her genome mapped and were finally able to name the mutation that was causing her problems, USP7.  No disease name.  No course of treatment. No new prognosis.  Just USP7.

Using that tiny bit of information, Bo sent a signal to the world looking for help.  You’ll need to listen to the show to hear what he did and where it led.

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About the Podcast

Raising Rare
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.

That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.

They were alone.

They were scared.

And then they went into action.

And now they want to share their story.

Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.

We don’t know where this story will go. We do know we want you to join us for the journey.
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About your hosts

Sanath Kumar Ramesh

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Kevin Freiert

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