Episode 5

full
Published on:

14th Mar 2021

More Than You Can Handle (Part 2)

In Part 2 of our powerful interview with author Miguel Sancho and his wife Felicia Morton we talk about the myriad decisions that parents raising a child with a rare disease must make. Their son was born with a severe immunodeficiency known as chronic granulomatous disease (CGD).  The decisions range from the ones we cannot imagine having to make to the common decisions we all make.

Renowned experts provided input but the decision to take the drastic step of an umbilical stem cell bone marrow transplant fell to them. This forced them to make a series of “life-event” decisions: where to live, career choices, and schooling for their healthy daughter. 

Piling these decisions upon each other led to emotional strain which could have led to decision paralysis. They learned that there is a difference between knowing what you have to do, and then actually doing it.

We talk about the biases that we all bring to making decisions.  Felicia felt like she could not watch her child go through the procedure until another mom told her, “You can do this. You will do this.”   Miguel just wanted to avoid disruption in their lives.  He had to get past this for them to do what was need. 

This couple has dealt with this experience in their own distinct ways. Miguel wrote a book, Felicia started a nonprofit. Control what you can. Get more information. Try to let go of the control. We get a chance to hear more about CGD Association of America, an advocacy that Felicia has started to support families through this forest of decisions.

Please order Miguel’s book today, More Than You Can Handle:

A Rare Disease, A Family in Crisis, and the Cutting-Edge Medicine That Cured

the Incurable

Show artwork for Raising Rare

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.
Donate to Cure SSMD

About your hosts

Sanath Kumar Ramesh

Profile picture for Sanath Kumar Ramesh

Kevin Freiert

Profile picture for Kevin Freiert