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.