Episode 12

Published on:

26th Jun 2021

Living Proof: Terry and Billy Ellsworth - Part 2

In Part 2 of our discussion with Terri and Billy Ellsworth we talk about the experience of being in a clinical trial for Duchenne Muscular Dystrophy.  We hear from Billy – his memories and his perspective.  It was a chance of a lifetime, but it was scary for 10-year-old.  Billy talks about bonding with the other boys in the trial. 

We also talk to Billy about his interests and what he has done since the clinical trial.  He has been fortunate because the exon-skipping drug worked well for him.  Even though he still gets weekly treatments, he is just a regular young guy.  However, he has an appreciation for the everyday things he can do without assistance. 

Terry also shares how she found herself doing more and more on the advocacy front.

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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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