Episode 4

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Published on:

27th Feb 2021

More Than You Can Handle (Part 1)

We have all heard the inspiring stories of a family that suddenly faces the trauma of a rare diagnosis, become advocates for themselves or their child, finds a solution, and celebrate the triumph. This one is different. 

Miguel Sancho and his wife Felicia Morton were that family. They became advocates and went on a wild medical adventure. And today, they can celebrate the triumph. However, they have decided to share the harder part of their journey.  

Miguel has written an enthralling book entitled More Than You Can Handle: A Rare Disease, A Family in Crisis, and the Cutting-Edge Medicine That Cured the Incurable.   It is the story of a family straining under the weight of their son’s diagnosis of chronic granulomatous disease (CGD).  Written in the first-person, Miguel shares his deepest thoughts, fears, and vulnerabilities. He relates the mistakes he made along the way and how he has come to grips with them. 

It was wonderful to have Felicia give her angle on some of the stories too. Felicia has used the experience and started a nonprofit CGD Association of America. CGDAA is committed to advocating on behalf of patients, carriers, and families by providing clear, accurate, and independent news and information about CGD and advancing CGD research.

During the interview, Miguel and Sanath connect in a way that only rare dads can. Sanath is at one end of the tunnel, filled with little more than hope and drive. Miguel is at the other end of that tunnel, able to provide encouragement and speak of hopes fulfilled. 

We highly recommend Miguel’s book.  It is extremely well written and the story teaches some important lessons.  It will be available starting March 2. You can order it on amazon. More Than You Can Handle 

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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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