Our guest this week is Miguel Sancho, of Larchmont, NY a journalist and an Emmy award winning TV producer. Miguel and his wife, Felicia Morton, have been married for 16 years and are the proud parents of two; Lydia (13) and Sebastian (9), who was diagnosed with CGD, Chronic Granulomatous Disease, a rare genetic disorder in which white blood cells called phagocytes are unable to kill certain types of bacteria and fungi. People with CGD are constantly at risk of developing bacterial and fungal diseases that can be life-threatening.
Miguel is also the author of: More Thank You Can Handle: A Rare Disease, A Family In Crisis, And The Cutting-Edge Medicine That Cured The Incurable. Miguel is a gifted story teller and he shares his family’s chaotic, exhausting, funny, heartbreaking nerve-racking journey in a very authentic way. It’s an enlightening and illuminating story all on this SFN Dad To Dad Podcast.
More Thank You Can Handle: A Rare Disease, A Family In Crisis, And The Cutting-Edge Medicine That Cured The Incurable
CGD Association of America – https://cgdaa.org
Be The Match – https://bethematch.org/
Duke PBMTU Family Support Program – https://dukepbmtfamilysupport.org/
NIH – https://www.nih.gov
Ronald McDonald House – https://www.rmhc.org/
COTA (Children Organ Transplant Association) – https://cota.org/
Immune Deficiency Foundation – https://primaryimmune.org/
Make A Wish Foundation Hudson Valley – https://wish.org/hudson
North Carolina Cord Blood Bank – https://sites.duke.edu/ccbb/
Website – https://www.miguelsancho.net
Email – firstname.lastname@example.org
Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.
Miguel Sancho: And when I told him, he was in my office, and he came around my desk and put his hands on my shoulders. And instead of saying, “I’m so sorry,” or “I’m here for you,” or whatever, he gave me a very specific piece of advice, which is, “Just focus on what’s in front of you. Don’t worry about the big picture. The big picture will overwhelm you. Just focus on what you have to do next.”
Tom Couch: That’s our guest this week, Miguel Sancho, an Emmy award-winning TV producer and author, and a father of two, including Sebastian, who has CGD, a rare children’s disease. We’ll hear Miguel’s story and some sage words on this Special Fathers Network Dad to Dad Podcast. Say hello to David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help, or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.
Tom Couch: And now let’s hear this conversation between Miguel Sancho and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Miguel Sancho of Larchmont, New York, a father of two, an Emmy award-winning television producer, season media executive, and more recently an author. Miguel, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Miguel Sancho: Well, David, thank you so much for having me, and thank you to your audience for tuning in.
David Hirsch: You and your wife, Felicia Morton, have been married for 16 years and are the proud parents of two children, daughter Lydia, 13, and son, Sebastian, nine, who was diagnosed with CGD, which stands for Chronic Granulomatous Disease. I hope I got that right.
Miguel Sancho: David, don’t feel bad. When you enter the rare disease community, you in inevitably stumble down a well of incomprehensible and unpronounceable disease names. So I grant you full pardon.
David Hirsch: Okay, thank you. Let’s start with some background. Where did you grow up? Tell me something about your family.
Miguel Sancho: Yeah, sure. My mother has passed away, but she was originally from Costa Rica, and my father’s from New York. They met in graduate school at the University of Kansas, of all places, and that’s where I was born.
David Hirsch: So, how long did you spend in Kansas, and then where did you go from there?
Miguel Sancho: Yeah, I lived in eastern Kansas and then Kansas City proper, until the age of 14. Then I went to boarding school on the east coast. I was very fortunate to be able to attend Phillips Andover Academy, and stayed in the east for college.
And I was supposed to go get a PhD like my father, but instead I kind of got bitten by the journalism bug. And now instead, I’ve arrived here in my basement with a bunch of books behind me, talking to you fine people.
David Hirsch: I love it. So out of curiosity, what did your dad do for a living?
Miguel Sancho: My dad was a college professor at a small community college type institution in eastern Kansas called Ottawa University. And for a while, a long time, frankly, I kind of thought relatively little of his professional accomplishments, because he was a brilliant man, and I thought he could have published a lot and achieved a lot in research in his field of physical chemistry. But then ultimately I came to realize that what he was doing—which was essentially helping people who had a high school diploma but needed some sort of college degree—to advance their careers. As a result, I really admire my father and what he did, and all the people he helped.
David Hirsch: That’s fabulous. So I’m sort of curious to know, how would you describe your relationship with your dad?
Miguel Sancho: Well, I don’t think I would be deviating too far from the norm to say that my relationship with my father had its ups and downs. My father was kind of a lecturer. His default mode of expressing himself was kind of switching on the lecture mode in his mind, and it served him quite well. That’s what he did professionally, and of course it wasn’t that big an effort to transpose that mode of discourse, the mode of communication, onto his family.
So that tendency, combined with the fact that he was rather extraordinarily erudite was, on the one hand, very helpful, and on the other hand, you know, rather annoying at times. Nobody likes a know-it-all. And you combine that with the fact that a know-it-all happens to have more or less absolute authority over your life for your childhood, there were plenty of frictions
But he was always very loving, and he ultimately was very helpful. There’s very little that I have accomplished in my life that I would say had nothing to do with my father’s influence and support and dedication. He was very devoted to the education of his children and their cultural literacy. And, you know, without him I would’ve been a much, much different.
David Hirsch: Yeah, well, if I can paraphrase or summarize, he was super smart, very present, and the emphasis on education has paid off in your situation as well.
Miguel Sancho: Yeah. I will also say that as he aged, he mellowed to the point where he became this very jovial, you know, a “ghost of a Christmas present” kind of character in my life, who was always kind of up, you know, no matter what, he would always want to see the brighter side of things. When we got together, it was always a celebration. It was always a cause for joy and happiness. And he was a jubilant figure, right up to his death.
David Hirsch: That’s fabulous. So my recollection was you took a BA from Harvard in government and history, and you already mentioned that you went into journalism. And I’m going to try to do a credible job, because you’ve had an extraordinary career. You spent about eight years at CBS as a producer, at the CBS news magazine, 48 Hours. You spent about 20 years at ABC, including at the ABC news program 2020, hundreds of primetime broadcasts, ranging from long-term documentary projects to live breaking news specials.
And then more recently, you’re at the A&E networks in a variety of projects, including “The Proof Is Out There” on the history channel, “Black Patriots: Heroes of the Revolution.” And most recently, you won a 2017 Emmy for a long hour documentary special on the Las Vegas massacre.
Miguel Sancho: First, I was only at ABC for 10 years, not 20. I’m only 50 years old, even though I could pass for 70.
David Hirsch: You and Felicia been married for 16 years. How did you meet?
Miguel Sancho: Well, we met in 2003 in a bar. I was hosting a screening party, a watch party, for one of my shows. And I invited literally everybody I knew, and some of them showed up, and some of them brought friends. And Felicia, that’s my wife’s name, happened to be one of them. And that’s how it all began. That was March 5th, 2003. And on August 27, 2021, we celebrated our 16th anniversary.
David Hirsch: Well, congratulations.
Miguel Sancho: You know what? I accept those congratulations, because staying married is not as easy as people might think when you’re smiling for your wedding photos.
David Hirsch: Well, let’s switch gears and talk about special needs, first on a personal basis and then beyond. And I’m sort of curious to know, before Sebastian’s diagnosis, did you or Felicia have any exposure to the special needs community?
Miguel Sancho: I can answer that pretty easily. The answer is no. Aside from a couple of stories I was fortunate enough to produce and do for some of my TV shows, but no. In fact, I’m not proud to say this, but I was kind of the person who kind of got uncomfortable around special needs people. I might move to another seat on the bus to put some distance between them, and I didn’t want to think about what it would mean to either live with those challenges or to raise a child who had those challenges.
And I will say this, that my experience has, thank goodness, rather radically transformed that perspective. And to this day, even if it’s just looking at somebody in the car in the next lane…it happens, right? You see a mom transporting a child with a serious developmental issue, and I just am in awe they that they’re able to do it, that they’re committed to it.
You can tell oftentimes that they’re doing work, right? It’s not just all easy, and they’re not walking between the raindrops. But to have that strength and that acceptance and that peace and that infinite love is really breathtaking. And I salute them, and I’m in awe of them.
David Hirsch: Yeah. Well, we are looking at that from the same perspective. I’ve been saying for well over a decade that some of the best parenting that I’ve witnessed is in the special needs community. These parents are fierce advocates for their sons and daughters, in many cases because of the vulnerability that their children experience. And you know, there’s a lot to be learned if you were to slow down or take the time to appreciate the type of commitment they’re making.
So thanks for sharing. So what is Sebastian’s diagnosis, and what’s the backstory?
Miguel Sancho: Okay, well, there’s a long version, but I’ll give you the kind of Wikipedia piece. My son was born in 2012 to what we thought were perfect circumstances. He’d aced all his amnio tests and all the stuff they’d done at the time. But when he turned about two months, he started experiencing a series of mysterious infections that required hospitalization, minor surgeries, and most terrifying, which baffled every specialist and pediatrician who examined him.
And it was only after, I want to say three, maybe four operations, that my wife insisted that we go to an immunologist, because she suspected there might be something wrong with his immune system since he kept getting these infections, any one of which isn’t that rare, but when you stack up the series of them, the kind of conditional probabilities start plummeting exponentially.
So it was when he would turn five, we went to a great immunologist in Manhattan who performed a battery of rather exotic tests as immunologists often do, and he was able to determine that yes, he had this very rare and notoriously lethal condition called CGD.
David Hirsch: What is that?
David Hirsch: It is basically a monogenetic mutation on the X chromosome that made it impossible for him, and for any other patient diagnosed with a similar condition, to fight off a handful of common bacterial and fungal infections. I say it’s lethal, and when it was first identified about 50 or 60 years ago, it was lethal. In fact, it was called Fatal Chronic Granulomatous Disease. I’m getting that wrong, but the word fatal was involved in the initial title.
They have now changed the title to “chronic,” because, thank goodness, there have been all these quantum level advances in everything from treatment to maintenance of the condition. So the diagnosis is no longer a death sentence. Nevertheless, any patient who gets the diagnosis can count on either a seriously compromised quality of life, a seriously compromised quantity of life, or both.
David Hirsch: Wow. So if I can paraphrase, things started to show up at two months, a series of operations, and some advanced immunology research discloses that he has CGD. And I’m wondering over that period of time, with all the craziness that was going on, with his health going up and down, what were some of the fears that you faced as a father?
David Hirsch: Well, it was a very tough time. For starters, I want to put it in the context of my aforementioned inexperience with not only special needs people in general, but within my own family. In fact, I didn’t have much experience with significant health issues of any kind with my family.
I was not raised rich. As I mentioned, my father was a college professor, but I was very blessed in terms of never having to deal with serious setbacks. And I had been led to believe by past experience, that future experience would continue to be kind of one uninterrupted upward trajectory. But as you know from your financial background, past performance is no indicator of future performance.
But when this hit…in other words, I was maybe not the worst guy in the world this could have happened to in terms of being prepared and having the fortitude to roll with it, but I was in the 15th percentile at best. So it completely upended how I thought our lives were going to go, how I was expecting even just our daily routines.
Having children is intrinsically an optimistic act. Right? You wouldn’t have children if you thought they were going to have a life of uninterrupted suffering. You wouldn’t have children if you knew there was going to be a nuclear war in three weeks. Right? In the act of having children and parenting is a wager on the future.
And so when you are hit with some sort of bad luck, and not just bad luck, but some out of the blue… I mean literally, CGD occurs in one in every 250,000 births. And so when your kind of bad lottery ticket comes up like that, it completely disrupts your entire understanding of the universe, and how you’ve imagined your life, and how you’ve kind of planned it out.
I’ve said this before, but it felt like falling off the lido deck of a cruise ship and finding yourself in the middle of the Gulf of Mexico, watching the stern of the ship go over the horizon. And that was very challenging for me on a number of levels. It bled into every aspect of my life at the time, certainly my domestic relationships, my marriage, my professional relationships, and my own mental health.
David Hirsch: Well, one of the things that you’re really gifted at is creating images, right? With your words about falling off the deck of the cruise ship and watching the ship go off into the horizon is very vivid. And the feeling of being lost and helpless is what comes to mind.
And I’m wondering, was there any meaningful advice that you or Felicia got early on that helped maybe throw you the life ring in the analogy?
Miguel Sancho: Right. So, you know, when things like this happen—and I’m sure many people in your audience will nod their heads in recognition—people have a tendency to hit you with some well-intentioned, but ultimately rather bankrupt cliches. You know, “If there’s anything I can do.” “The good news is your child has the best parents in the world to help them get through this.” “God never gives you more than you can handle.” All that stuff.
And again, I feel bad for people who have to express sympathy and condolences, because the language just doesn’t necessarily always equip us with ways to come across as sincere and non-cliched.
But the best advice I got was from a colleague when I told him about this. For a good solid month, I had a very difficult time even explaining the situation to anybody without crying. And when I told him, he was in my office, and he came around my desk and put his hands on my shoulders. And instead of saying, “I’m so sorry,” or, “I’m here for you,” or whatever, he gave me very specific piece of advice. He said, “Just focus on what’s in front of you. Don’t worry about the big picture. The big picture, definitionally by being big, will overwhelm you. Just focus on what you have to do next. What are the next steps? What’s immediately in front of you?”
And I think that is wonderful advice for anybody, not just dealing with the immediate impact of a special needs diagnosis with their kids, but with any kind of emergency or life-altering news or whatever. There will be plenty of time to ruminate and to ponder the profound implications of things. But the best thing you can do for yourself and those around you is to just try to focus on the immediate situation, the immediate needs, the immediate next steps.
David Hirsch: Yeah. Well, what profound advice. And I wonder if people get that advice, and they just can’t accept it or just don’t understand the value of it. I could see that applying to virtually every aspect of our lives. It could just be at work, right? You’re overwhelmed with everything that needs to get done and you get sort of frozen. And what you need to do is focus on one thing at a time, and then solve the small pieces to the puzzle, and then all of a sudden the big picture comes into frame.
Miguel Sancho: Or even if it’s not a crisis, even if it’s just a big goal. You know, a lot of people want to run a marathon. But because they can’t even run 10 miles or three miles when they first go, they, they quit. A lot of people want to write a book, but because, the first two paragraphs don’t sound like Jonathan Franzen or William Shakespeare, whoever your favorite writer is, they say, “Oh, I’m no good at this.” And then it becomes a challenge for them even to start up the computer. You know, just do the baby step.
David Hirsch: Well, I think that would make a great title for a book, if it hasn’t already been used. Just focus on what’s in front of you. So were there some important decisions that you made as parents early on in the journey or along the way that you can reflect and say, yeah, this was instrumental, with the benefit of hindsight?
Miguel Sancho: Well, there were some very immediate, practical decisions. They weren’t that immediate. I should take that back. There was some big, practical decisions we had to make in terms of Sebastian’s care and treatment options because, as you know, every disease is different.
But one of the quirky things, you could say one of the cruel things, about this particular disease, CGD, is that there’s no obvious path forward. I often make a contrast with leukemia. Now, leukemia is a very serious disease. I wouldn’t wish it on anyone. But in many cases, not every case, but in many cases, the path forward’s very clear. You have to get a bone marrow transplant, or you will be dead in six months. Right?
With CGD, it’s two different but very difficult choices. You can choose to live with the disease, try to manage it, and try to live the best life you can. And again, I really need to underscore that there are new modalities of treatment that are coming forth almost every year that increase the odds of being able to do that successfully.
But my son had the most serious version of the disease you can pretty much have. And we had a lot of doctors put scary charts in front of us, saying that even with the best regimen of medications and environmental restrictions, the odds really didn’t favor him living much past 25.
So the other option was what I described with the leukemia patient, a bone marrow transplant or a stem cell transplant, that is basically a de facto immune system transplant. You eliminate the existing flawed immune system, and if you are lucky enough to find a matching donor unit of cells, infuse those, and then try to build a new one from scratch.
So we had to kind of make our decision about what to do with that. And then we had to kind of figure out, if we were going to try to transplant, how that would work? Where will you do it? What kind of specialists would we use? In rare diseases—this is a common thing with all rare diseases, right?—they’re rare.
So there’s not a lot of data. There’s not a huge patient population from which the doctors and the researchers can assess what the phenotype is and can really do broad studies that give you solid data about treatment protocols and options and medications and adverse side effects, and all the things that you would want when you’re talking about medical options. So in an era of big data, we have this problem of small data.
And again, anybody with any kind of medical problem will know that it’s not the easiest thing to get a straight answer out of a doctor. They’re so worried about not being able to guarantee anything, they’re worried about over promising anything. There’s always this whole train of qualifiers and disclaimers that come with any kind of medical advice you get. So just trying to get clear straight answers is often itself a challenge, particularly in a situation where there’s so much still in the shadows.
So to answer your question finally, after several months we made the decision that we were going to try to explore the one curative treatment, which is the bone marrow transplant. And then we went on this kind of Arthurian quest to try to find both an ideal place to transplant them, because it’s a highly specialized thing, and to try to find an actual donor unit that would make the transplant feasible.
David Hirsch: And where did that journey take you?
Miguel Sancho: Well, ultimately, through all sorts of trial and error—and this is one thing that is worth noting in one of our messages—I’m Latino, my wife is of Northern European extraction, among other things. And when you’re dealing with kids who have kind of mixed ethnicities or semi-exotic ethnicities like that, the odds of finding a matched unrelated donor in the bone marrow transplant world kind of go down rather drastically. So we couldn’t find a donor in the normal way, by using the national Bone Marrow database and the “Be the Match” organization.
Ultimately after just hitting roadblock after road block, we turned to the Carolina’s Cord Blood Bank and the team at Duke University Hospital, who were pioneers actually in this relatively new form of transplanting using unrelated umbilical cord blood, which is one of the breakthrough discoveries in the field in the last 20, 30 years.
David Hirsch: At the risk of focusing on the negative, what were some of the bigger challenges that you and Felicia encountered?
Miguel Sancho: Well, one of them was that our relationship, but also our lives, had never taken a body blow like this. So there were these intense grieving periods, even though nobody had died. But we were obviously in a period of depression and trauma.
And oftentimes it’s the case that something happens to one person in the couple, but not the other, right? One person has a parent who dies. The other person can be strong and support them. One person has a setback in their career. The other person can support them. One person has a health issue, the other person can support them.
But in this case, it had hit us both at the same time. As I said before, I was rather unprepared for it emotionally and psychologically. And my wife, it’s not hard for me to say, is kind of a stronger, tougher person than I am. Nevertheless she had to deal with something that lots of moms talk about when it comes to x-linked genetic mutations—she had this rather intense period of guilt and shame. She didn’t know anything about this condition. There were a couple nights I remember quite vividly when my wife was curled up on the couch crying because she felt guilty that she’d kind of inflicted this condition on her son.
David Hirsch: Yeah. Well I think you’re in a psychologically slippery slope when, like you said, both individuals in a couple are hit at the same time. It’s not the strong one can help the weaker one. And I’m wondering, when you look back on the journey that your family was on, if there was a turning point that helped you or helped the two of you sort of get on the right path and get to the focus that you needed to have.
Miguel Sancho: Well, yeah. I mean, about a year after the initial diagnosis, I had tried pretty unsuccessfully to deal or cope by kind of trying to be somewhat stoic about it. I tried to lose myself in work. And I don’t advise that. I think it came out of a somewhat retrograde, somewhat kind of a Stallone/Schwarzenegger movie-infused definition of what it means to be a man, what it means to be a father.
And that’s great for the movies, but it doesn’t have that good a track record in terms of its practical applications. So despite an overabundance of indicators that I could benefit from some sort of therapy, that our relationship could benefit from some sort of couples’ counseling, I resisted all that. Which is kind of silly, given the fact that since I was a teenager, I’ve been pretty amenable to recreational drug use.
I resisted psycho-pharmacological drug intake. And by the way, I mean mostly marijuana, which I’d been smoking on and off since I was about 15. And you know, I would say to this day I have about a $50 a year habit. But finally our relationship hit a rock bottom of sorts in August of 2013.
And my wife, who again doesn’t have any difficulty expressing herself, made it quite clear that things had to get better or we were probably going to have to get separated and possibly divorced. And so that sent me on this journey of sorts that was kind of a semi-comic trial and error period where I was adopting and experimenting with a wide variety of modalities of self-help, many of which helped, none of which were perfect solutions and panaceas.
And that ultimately led me to adopt a program that involved kind of a hopscotching cafeteria style approach to self-help that I’m still practicing today.
David Hirsch: Yeah. Well, if you don’t mind me pressing, what were some of those “modalities”?
Miguel Sancho: The first was meditation, which I do recommend, and it has helped me for the past, whatever it is now, seven or eight years. But it did not solve all my problems. I think it certainly helped make it easier for me not to constantly react, to be enslaved to intense feelings or thoughts or emotions or stimuli. And it also helped me focus on the practice of lovingkindness and being patient with others and being more conscientious of other people’s feelings and suffering.
But, you know, after a couple months of doing it pretty intensely, we had some bad news on the health front, and I found myself completely backsliding into this world of fear, anger and anxiety, and sadness. And, you know, I didn’t give up on meditation, but I realized that I needed to supplement it with therapy and medication.
So I ended up going on a low dose of antidepressant and an “as needed” anti-anxiety medication—and I’m happy to say that the “as needed” became less and less frequent over the long term. And then Felicia and I, not just at that time, but on and off for the past however many years—it’s been coming up on eight years—when we need it, we certainly aren’t shy about availing ourselves of couple’s therapy as well.
David Hirsch: Yeah. Well, thank you for your transparency. It’s something that a lot of men have a difficult time talking about, and I’m going to draw an analogy with what you were saying earlier about your work, about trying to keep your bias and preconceived notions in check or being objective about them.
And you had said that maybe your view of, or initial reaction to, the challenges was to dive into work and be stoic. Which is something that I think comes naturally to us men. You know, we’re fixers, we’re problem solvers. We’re the gender that doesn’t pull over and ask for directions when we’re lost.
And you needed to make some adjustments, right? Because if you think you’re going to fix the problem on your own or figure it out on your own, you’re going to be terribly frustrated and make some disastrous decisions along the way. And what I heard you describing was putting your own sort of innate way of thinking about things aside and accepting, or at least incorporating, some additional ways of addressing the issue.
And it’s not a one size fits all. There’s not a silver bullet, but you’d emphasize that meditation helped. And you became open-minded to the fact that maybe there are some therapies or medications that could also assist in the situation. And those are rabbit holes that some people just don’t want to go down.
And I think that being most transparent about the need for therapy, whether it’s individual or couples’ therapy, is really important, right? When you’re faced with overwhelming challenges, you have to invest in your relationship, and sometimes that means opening up or bringing somebody else in to help mediate at some level, or at least help you put some of the challenges that you’re having in perspective. So again, I want to thank you for your transparency.
Miguel Sancho: Yeah, well, I mean, it took me a long while to get here. But I was that guy who always felt if there’s a problem, sweep it under the rug, and if the problem’s too big, get a bigger rug. But what would happen is I would underreact and keep a stone face for a while. But in the meantime, there were kind of geological pressures building up beneath my skin that would erupt, and I would have an anger outburst, or I would have a crying jag, or I would do something that would actively create hell on earth for the people in my immediate vicinity.
So, you know, you can do a lot worse than just being mediocre. You can actively make the situation worse. And I was doing that, not all the time, but enough that it was something that needed to be taken care of.
David Hirsch: Yeah. Well, thank you again for your transparency. So I’m sort of curious to know what impact Sebastian’s situation has had on his older sister Lydia, or your extended family for that matter.
Miguel Sancho: Right. Well, so it’s been some time now. You know, we went down to Duke in 2016. We spent essentially a year getting the bone marrow transplant and dealing with the post-transplant recuperation process. And for Sebastian, it means he’s basically—some qualifiers there—but he’s basically completely cured to the point where we live our daily lives almost as if it never happened, aside from conversations like these.
My daughter during that time, okay, she was not tasked, but she kind of fell into the role of being the cheerleader for the family. She was the healthy kid, she was the fire hose of love and this constant ray of sunshine that kept me and my wife, and to a great degree during his transplant, her brother, kind of up and positive and going for it.
And there’s all sorts of literature that backs up the hypothesis that if you’re the healthy kid in a family where there’s a sick kid, it can feel overwhelming, right? Because you oftentimes feel this obligation to be perfect and to be up and to be that third parent in a certain way. And also you can start feeling resentful that the sick child is getting all the attention, all the love, all the extra care.
So we tried really hard to be cognizant that and let her be yourself. And to this day, we still try to do that. We are trying to be very mindful of focusing a fair amount of our energies on making sure that she has the support, the vocabulary, the love and the leeway to kind of navigate her way through these teenage years.
David Hirsch: Yeah. Well, just the way you’re articulating it emphasizes, at least to me, your understanding of some of the challenges that she’s encountered or may encounter as a result of her life’s experience. And just that in and of itself gives you an advantage, as opposed to being blind or ignorant to the situation.
So I’m hoping that her path will be one that is transformative and that she can put all these life experiences that some kids haven’t had into perspective, and then it might be the rocket fuel that propels her to find her calling in a way that maybe she wouldn’t otherwise.
Miguel Sancho: Yeah, I see glimmers of that, green shoots of that potential there. But I agree with you. It’s kind of our job to make sure that she pursues those passions and she turns her own lemons into lemonade.
David Hirsch: So let’s talk about supporting organizations. You’ve made reference to a couple of them. I’m wondering, what comes to mind when you think about the journey you’ve been on? Who would you attribute some of the successful experiences to, that you’ve had?
Miguel Sancho: We experience, and many people do, this kind of spontaneous blossoming of a support system. Some were people who do this professionally, and they work with nonprofits that are kind of dedicated to families dealing with some aspects of our situation, and some just people we barely knew who, for no reason that I can explain rationally, made it their mission help us, devoted a lot of their time to help us.
But organizationally, yeah, we found ourselves quite blessed by having the ability to avail ourselves with the services of a number of organizations. Some of them were obvious that I’ve mentioned already, you know, the “Be the Match Foundation” who helped us look for a match for Sebastian. Now that wasn’t successful. It was nevertheless very helpful to know that.
The NIH, who basically is the world’s leading research center for my son’s particular condition and many others. Then, some of the other ones that you’d expect, the Ronald McDonald House, that I had a unique experience with. But there’s also an organization I really want people to know about, called the Children’s Organ Transplant Association, which basically helps raise funds to help pay the expenses of families going through these kinds of things, and they really need more publicity.
There was a CGD organization that my wife got involved with, called the CGD Association of America. It’s a group of other moms and parents who dealt with the disease. And as is the case with almost any disease, the parent support groups are very helpful, not just for the support part, but for the practical how-to stuff.
And so Felicia is herself devoting a fair amount of her professional time these days to running that organization and helping other moms, because even pretty well into the 21st century, with all the knowledge on the internet, there’s still a need for guidance and helpful, practical, actionable information.
David Hirsch: And I think you already mentioned previously the North Carolina Cord Blood Bank, and the instrumental role that they played.
Miguel Sancho: Yeah. I mean, one could write a book about everything that they’ve done. In fact, I have. But a lot of states now have it, not just the Carolinas. I know there’s a big one in California. There’s one in New York. A lot of states have publicly funded core blood banks, and it costs nothing. You know, when they’re in the delivery room giving birth, moms, parents have the option of donating a child’s cord blood. And I can’t emphasize enough what a great thing to do that is.
I mean, we all feel like we could do more, right? I know I could volunteer more, I could donate more, I could give more myself. This is like the easiest way to do something that saves people’s lives. The umbilical cord blood basically was considered medical waste just a few decades ago. And now we’re learning and continue to learn that it has nearly magical properties for treating and curing many diseases were considered incurable. And right there in delivery room you can check a box, and really it’s not an exaggeration to say you save somebody’s life.
David Hirsch: Yeah. Well, thank you for emphasizing that. We’ll be sure to include that in the show notes as well. And did I remember that Make-A-Wish also played an important role in your lives?
Miguel Sancho: Yeah. So I thought that Make-A-Wish was pretty much only for, frankly, kids who were going to die, or for destitute kids. But I was very humbled and pleasantly surprised to learn that even after Sebastian’s transplant, when it was highly likely that he was going to survive, he was still able to qualify for a Make-a-Wish.
And you know, these two women came to our house after we got back from North Carolina, and it was like fairy godmother. They made it happen. He had somewhat of an eccentric wish that they put into place and it actually occurred. And he had a wonderful experience. I don’t know who thought of that. Somebody had to think of that. But it’s a really great idea.
Obviously, those organizations exist all over the country. I think they’re all regional, right? Ours is the Make-a-Wish of the Hudson Valley, and they’re all over the place. But I highly encourage people to support those organizations because they make an immense difference.
David Hirsch: So what was Sebastian’s wish?
Miguel Sancho: So my son is, like many kids, totally into trains. In fact, if I were to turn this laptop around, you can see my son’s electric train set, dominating basically every square foot of our basement. And so he wanted to go on a train trip. We ended up doing a train trip with one of those kind of observation cars in Canada. And he had a great time.
David Hirsch: So, let’s talk about the book, which came out in 2021, the title of which is More Than You Can Handle: A Rare Disease, a Family in Crisis, and the Cutting Edge Medicine that Cured the Incurable.
When I think about this book, which I read, it’s obviously a very serious topic. The potential life and death of your child, the chaotic journey, the exhausting, funny, heartbreaking, nerve wracking, and most of all, authentic way that you have about communicating. What was it that helped you decide to put your story in writing?
Miguel Sancho: Well, it’s kind of my job to identify good stories, right? And it just so happened that in this particular instance, I found myself in the middle of a story that I thought was journalistically sound, journalistically valid. It had drama, but it also had interesting information, and had the potential at least to offer a perspective and build a narrative that would not just be kind of worth people’s time, but potentially useful for some folks.
It just so happened that, for the first time in my life, I was one of the characters in the story. There were a lot of things that rare disease families go through that sometimes are under discussed, shall we say. So that was kind of what motivated me to not just conceive the book, but finish it.
David Hirsch: So where did the title come?
Miguel Sancho: Well, it came from primarily the experience of staring at the ceiling in my bedroom during a sleepless night, of which there were many, and saying, if not out loud, then to myself, “This is more than I can handle.” Many people have had that experience, either staring at their ceiling or staring at their bathroom mirror or telling that to somebody, and it definitely defined my mindset for a number of years really.
But also it’s somewhat of a play on that kind of trite phrase, “God never gives you more than you can handle.” I’m not trying to belittle God, but I think it’s demonstrably true that many people indeed feel that they’ve been given more than they can handle.
So, just as a matter of presenting the book, I wanted it to be more than a book for rare disease parents. I was hoping it could be a book for anybody who’s dealt with circumstances that they thought were overwhelming.
David Hirsch: Yeah. Well, mission accomplished. Because, while I’m not the parent of a child with a rare disease, I could not put this book down. I decided to start listening to it on Audible on a long run. And I was like, oh, I cannot wait to listen to the rest of this book. And it took me four long runs, and it was just a page turner for me. And part of it, like I said, is your gift for storytelling, the self-depreciating sense of humor that you have, and I think the objectivity that you used to tell the story.
It wasn’t from just your perspective, and look at, “I’m such a great guy.” But chapter after chapter, you’re sort of doing a gut check and saying, “This is where I failed. This is how I overcame that challenge.” And I think the humility comes through, from the storytellers perspective. So again, thank you for taking the time to not only put the book in writing, but to create an audible copy, which I can highly recommend.
Miguel Sancho: Well, thanks. I mean, I’ll say this. The book was written A) by a TV producer who always has to be intensely mindful of the audience’s attention span, and B) from a guy who starts reading a lot of books, but doesn’t finish them. I finish plenty, but there’s plenty more that I start and don’t finish.
And the reason is because I don’t feel that the author has been mindful enough of my time and attention span to actually make the actual act of reading a page of text pleasurable—entertaining, that’s the word I’m looking for—enough to turn the next page and keep going. So, you know, I take it as a high form of praise that you made it to the end.
I mean, I’m sitting in front of a bookshelf here, and I can tell you right now that Stephen King does a better job than Thomas Aquinas at getting my attention and getting me to the end.
David Hirsch: And I hope the book enjoys continued success. So I’m thinking about advice, and I’m wondering, is there any advice that you might be able to offer our listeners, most of which you know are fathers or parents who are raising a child with special needs?
Miguel Sancho: Well, one thing, give yourselves a break. If you find yourself not being a saint, if you find yourself losing your temper, if you find yourself getting down—you’re not failing. You are being a human, you’re feeling things.
But that said, you can’t just pretend that this is going to take care of itself. Being compassionate with yourself is a start. There’s an active side of it too, which is acknowledging that things aren’t right and that things could be better and you could do better. And that should be an optimistic feeling, right?
Just like you can learn to code, and you can learn French, and you can learn to make artisanal cheese, whatever, you can also learn to be a better parent. Obviously some people are naturally inclined to do it. There’s a bell curve distribution, I’m sure. But no matter where you are in that bell curve, you can get better, if you feel like you can get better.
David Hirsch: Words of wisdom. Thank you for sharing. And I’m sort of curious to know, why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Miguel Sancho: Because ultimately I think it’s the most fulfilling thing I’ve ever done. You were very generous talking about some of my so-called professional accomplishments, but you know, who cares? Being a parent is the most meaningful, the most fulfilling, the most challenging. It’s what to me makes my life mean anything. Frankly, I have a difficult time remembering who I was before was a parent. You know, I can describe that person, but I have a difficult time inhabiting or rewinding my mindset to what that was.
So it’s important. And children will have all sorts of influences in their lives—teachers, television shows, whatever role models—but ultimately there’s no diminishing the fact that your parents are going to have a tremendous impact on who you are, including absentee, neglectful, half-assed parents. So you can’t choose not to influence your kid’s life.
David Hirsch: Absolutely. So is there anything else you’d like to say before we wrap up?
Miguel Sancho: Just again, that I’m much more of a thought follower than a thought leader in this world. I should be listening more than I should be talking it. It’s nice that you had me on. It’s nice that some people have read the book. I appreciate it.
But I continue to approach this whole thing with the utmost humility because my imperfections are multitudinous and obvious and need to be acknowledged. So thank you again for having me, but I’m still a work in progress, and I’m looking forward to doing that work.
David Hirsch: Yep. Well, we’re thrilled to have you as part of the network. Thank you for sharing. Let’s give a special shout out to Alina Hoffman, at Nordic Media for connecting us.
Miguel Sancho: Oh, yeah, she’s great.
David Hirsch: If somebody wants to learn more about the work that you do or your journey or contact you, what would be the best way to do that?
Miguel Sancho: Well, I spent a little money to build a website, and it’s miguelsancho.net. Don’t confuse it with.com. I believe there’s a very attractive model from Spain who’s got miguelsancho.com, who’s probably worth checking out too. But if you are interested in me, I would go to miguelsancho.net. There’s probably more information there than you’d ever want. And I’m on LinkedIn, and I’m actually pretty easy to reach. And yeah, that’s the one stop shop.
David Hirsch: Excellent. We’ll be sure to include that in the show notes as well. Miguel, thank you for taking the time and many insights. As a reminder, Miguel is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax acceptable contribution? I would really appreciate your support.
Miguel, thanks again.
Miguel Sancho: Thank you. Great talk.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children are matched up with mentor fathers in a similar situation. It’s a great way for dads to support other dads.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to email@example.com.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.