Episode 8

full
Published on:

1st May 2021

Nicole Horvath: A Life of Outliving Cystic Fibrosis Expectations

When Nicole Horvath was born, she had a terminal disease, and no one knew it. If they had known, they would have given her only 18 years to live. 

When she was 20, she had to drop out of college because she was showing severe symptoms. This is when she finally got a diagnosis of cystic fibrosis (CF). At that time, all they good do was use physical therapy and nebulizer treatments to loosen up the mucous in her lungs. The goal was to reduce the number of infections. Luckily, the life expectancy for CF had increased to 32 years.  

Ten years later, she learned about a clinical trial and began a routine of traveling across the country to get experimental treatments.  And this is when her life began to change… miraculously.

Please tune in to our occasional series “The Other End of the Tunnel” and hear Nicole’s story about living in that tunnel.  

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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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