223 – Mike DeLeon of Pacific, WA Father of Four, Including Two with UCD and Co-Founder of Connecting Families UCD Foundation

Transcript:

Tom Couch: [00:00:00] 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.

Mike Deleon: When my wife lost her first son to UCD and we lost another son together years later, there was nobody to talk to. There was no one to connect with. There were no other families that we could associate with, that we could relate to, that could relate to us. 

Robin Deleon: So we decided that it would be good to start a group to bring families together. So we started a Facebook group and it grew. And from that, my husband and I decided that we needed to do more. So we created a 501c3 [00:01:00] foundation with the help of Global Genes. 

Mike Deleon: We named the organization Connecting Families UCD Foundation because that’s what we do. We connect families. 

Tom Couch: That’s our guest this week, Mike Deleon, an aviation and space professional. Mike and his wife Robin had to endure the worst nightmare of a parent: the death of a child. Their son Michael passed away in 2000 at age three months. It was the second child Robin had lost to a condition called urea cycle disorder, or UCD. We’ll hear how Robin and Mike were able to turn this negative into something positive, forming the UCD Foundation connecting families. It’s a rich, heartbreaking, heartwarming story that you’ll hear on this Special Fathers Network Dad to Dad Podcast. Say hello now to our host, 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 [00:02:00] 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: So let’s hear now this conversation between David Hirsch and Mike Deleon.

David Hirsch: I am thrilled to be talking today with Mike Deleon of Pasco, Washington, who has an aviation and aerospace background, the father of four, two of whom have been impacted by urea cycle disorder or UCD, and he’s the co-founder of the Connecting Families UCD Foundation. Michael, thank you for taking the time to do a podcast interview for the Special Fathers [00:03:00] Network.

Mike Deleon: Oh, thank you so much. It’s great to be here.

David Hirsch: You and your wife, Robin, have been married for 23 years, and between you are the proud parents of nine, including five from Robin’s first marriage, two from your first marriage, and you’ve also had two children with Robin. Sadly, your son Michael, diagnosed with UCD passed away in 2000 at age three months, and your daughter, Arlella, who is 19, was also diagnosed with UCD. Let’s start with some background. Where did you grow up? Tell me something about your family. 

Mike Deleon: So I grew up in a little town not far from where I’m living now, called Othello, Washington. Oh, I guess it’s a typical story. Mother and father divorced. I was fairly young. Got tossed around back and forth a lot between mom and dad, lived with grandparents for many years. Mom struggled financially. And thank God for grandma and grandpa and they were really the strong parental figures of my life. So bounced around quite a bit. So I’ve lived all over. So [00:04:00] while I was born there I’ve lived all over the country. [laughing] 

David Hirsch: Okay. And when you were growing up, did you have any siblings? 

Mike Deleon: I did. I had a sister. We weren’t together too long. We’re two years apart, and by the time I was six, I believe I was about six, I got sent to live with my father. And we didn’t really grow up too much together, but we got to see each other from time to time when I would come back, either this way or big family events, that kind of stuff. 

David Hirsch: Got it. So out of curiosity what does your dad do for a living? 

Mike Deleon: So my dad was in the Marine Corps. He served, I think over in Okinawa during the tail end of Vietnam. He was part of an F-4 Phantom program over there. He worked on jets in the military. I just thought that was so cool. When we finally did get to spend some time together… cuz when I was really young, like I said, I was with my mother. I didn’t really get to see my dad for the first time until I was probably about six or seven years old. And then, growing up with him, for a few years after that, he was into aviation and it [00:05:00] just really sparked something in me. 

David Hirsch: And out of curiosity, how would you describe your relationship with your dad? 

Mike Deleon: Oh gosh. How much time do you have? [both laughing]

David Hirsch: The Reader’s Digest version, please.

Mike Deleon: Yeah, my father and I had a really rough relationship. He wasn’t around much when I was really young. And then when my mother and father worked out some arrangement, which I’m still not really fully familiar with, for me to go live with him when I was about, like I said, about seven years old, we were thrown together and so we had to work through a lot of the stuff that we… We had to get to know each other. And my dad, when he was in the Marine Corps, he was that Marine. He had the attitude and still, I think it had just stuck with him for the rest of his life. [laughing] And he was pretty rough. He was pretty tough and he was very disciplined. 

Yeah, I guess the typical story is you could ask anybody this question about their marine dad growing up and depending on what age you asked that kid that question, it could be horrible. But I’m older [00:06:00] now. I’m almost 52. And looking back, he taught me a lot and there was a lot of lessons to be learned. Maybe not all of them intentional, in retrospect, that’s just how life works. And no regrets. Just a lot of good, valuable lessons in there.

David Hirsch: The image that comes to mind when somebody mentions that their dad was in the Marines and somebody of your dad’s era is that they’re sort of black and white, right? There is a way to do things. They were probably disciplined themselves as they were coming up in the Marines and there’s a lot of rigidity. And with that in mind, I’m wondering, were there any lessons that you learned, maybe something you’ve tried to incorporate into your own fathering, that you took away from your dad? 

Mike Deleon: Yeah. Yeah, I really like the way you put that. I think the rigidity, the lack of flexibility, only because it was beat into you or trained into you. I get that from him. I get that and I get why he was like that. But I think that was one of the biggest issues with [00:07:00] our relationship. Things weren’t always black and white, especially in relationships and especially with a son and a father that were just starting out together after the child’s seven years old. All of life, especially some of the things in relationships aren’t that rigid. There’s gotta be some flexibility and some fluidity in there. And if there’s none of that, then… And I think that’s probably what I struggled with the most with him was just trying to navigate when I could be flexible or when to approach him in a flexible, a sentimental, more compassionate way, or… I ‘m not sure if I’m explaining this right, but my dad had a method of doing things and it was like, okay, step one, step two, step three, this is how you get this done, blah, blah, blah. Got it. And on that, he was always on point. But when it came to matters of the heart, it was like I think we need to get some gray area in here. [laughing] And I think the fact that there wasn’t much with him, it made things really hard. 

David Hirsch: Okay. Fair enough. I hope I’m not [00:08:00] stepping on a third rail, but I remember in a prior conversation you mentioned that you didn’t finish high school. I’m wondering if you can share with our listeners what that experience was like. What was it that propelled you to go in a different direction before you did eventually decide to go to college?

Mike Deleon: The main reason why I didn’t finish high school was because my father, when I was living with him at the time, I think I was about, I think by the time I was in ninth grade, things were just really bad at home. Really bad. He was on his second or third marriage from the time that I was with him. Just a lot of problems with his wife and my stepmother. And he was going through a hard time. They had their issues and there were definitely some really bad times. There were some times when my dad started drinking. And I don’t know. I wouldn’t say he was completely out of control, but he was definitely emotionally pretty messed up inside. He would come home and take it out on me or take it out on [00:09:00] her. And it just would depend. I lived for a long time worried, I wouldn’t say it was in fear for my life, but I definitely would dread when I heard his car pull up. I would be worried because I didn’t know what to expect.

And that was my dad. You just didn’t know what to expect. And so because of that it was hard for me to have stability and I ran away from home several times before I ended up just leaving my dad for good. And he always hated it when it happened because I think he took it personally and he would always come looking for me and try to find me. And looking back now, I appreciate that. But there was something definitely there. Everything in me that was telling me, this just wasn’t working. And so I needed to find a way to just have some stability in my life, and that’s why I didn’t finish high school. So it would be years later that things would settle down for me and I’d finally get some stability and I did go back to college.

David Hirsch: So you went to college [00:10:00] and my recollection was that you got into the world of aviation and aerospace. And I’m wondering what your experience was there.

Mike Deleon: It was good. I really enjoyed it. So one thing about my dad’s side of the family is generations of mechanics and just really mechanically inclined men in the family. They just, they were men’s men. They loved race cars and they loved motors, and they loved engines, and they were motorheads. Our families were immigrants and they just completely adopted the Americana way. And they got into engines and their friends in high school, very American. That’s just the way it was.

They were very successful. Every one of my uncles had his own business or ran his own business. The oldest son of them all, at one point he owned I would say a good chunk of Main Street down in Othello. He had a fleet of trucks. He had a restaurant. He owned a [00:11:00] gas station with a service station for all the semis in there next door to that. Next door to that, he had bowling alley. Next door to that, he had another restaurant. Next door to that, he had a hotel down the street and some properties. So very driven, very ambitious family. My dad came from that and I just think that rubbed off on me. 

David Hirsch: Yeah. Thanks for sharing. I appreciate your authenticity. Out of curiosity, how did you and Robin meet? 

Mike Deleon: We met through a friend that I had. I knew somebody that I used to work with. When I was younger I was mechanically inclined so I used to work at a packing plant and I had a friend there, a really good friend of mine. We used to work out together and hang out together. And I was working at Miami International over there and about three months after I left, I get this phone call and it’s his wife and she’s telling me that they’re going through a hard time and that she wanted me to talk to him cuz we were friends. And so I talked to him, got on the phone with him and he just wasn’t having [00:12:00] it. I did what I could to try and talk to him, but eventually they got divorced. It’d be several months later that I came back to Washington from Florida. And I ran into her and we just started talking and then we started talking about the mess that was going on and the kids. And they were little and I don’t know, we just hit it off. And one thing led to another, and that was that. 

David Hirsch: Just to be clear, the woman in this story is Robin. That’s who you’re saying?

Mike Deleon: That’s right. That’s Robin. 

David Hirsch: Okay. [laughing] That’s fabulous. Okay, thank you for sharing. You prefaced it by saying it’s a long and an unusual story. It’s a good one. So thank you for sharing.

Let’s switch gears and talk about special needs, first on a personal basis and then beyond. I’m curious to know, prior to you meeting Robin and learning about her son Jesse, did you have any exposure to the special [00:13:00] needs world yourself?

Mike Deleon: No. None. Zero. 

David Hirsch: Okay. And just for the record, because we’ve talked before, Robin had five children. Her middle child, as I remember this story, Jesse died after just a few days, right? Very sad situation. So that she raised four children or you’ve helped raise four of her children as well. Is that accurate?

Mike Deleon: Yeah, so when we did get married, her oldest son, he was already gone. He wasn’t even there. Her next child was still at home, but I think he was just turning 18. And so he was one foot out the door already. So right after we got married, he ended up moving out and stuff. And so really the two that Robin and I raised together were Jill and Jedediah, and so we’re all really close.

David Hirsch: Okay. Thanks for sharing. She has two older boys from her first marriage, and you have two older boys from your first marriage for that matter. 

Mike Deleon: Yeah.

David Hirsch: Between the two of you, your first [00:14:00] child was your son, Michael, who was born in 1999. And I’m wondering what the circumstances were around his birth.

Mike Deleon: She got pregnant. Very normal, fine, typical pregnancy. It wouldn’t be until after… And then I guess what I should say next is that because of the possibility that Michael could have what Jesse had, Robin had been dealing with a geneticist out of Seattle Children’s when Jesse passed away. And so because she knew him and they had talked, they had kept in contact. So she contacted him when she got pregnant and she let him know what was going on. And so he wanted to be involved and kept in the loop and he wanted us to come there just to make sure. So the plan was to go to Seattle and have the baby.

We went over there. So she had Michael, Michael was born. I don’t think it was any more than about four hours after he was born. [00:15:00] And thank God that this physician was there, this geneticist. But he went into a crisis right away. It was awful. And so he almost died just from that hyperammonemic attack. There was no medicines on the market. There was nothing. There was an experimental med. And because Robin had kept in touch with this geneticist, he was up on some treatments that were possible or viable, but they were experimental. So we had to sign some paperwork just to let him administer it. But he did. And they got it into an IV. It was a little challenging for them to do that because he was so small, it was just a newborn. They started administrating this experimental medication and actually took several hours, but little by little, his levels started coming back down. So it was working. It didn’t work very quickly, but it did work. And his levels did come down, but I don’t know. He just was different. We [00:16:00] expected him to be moving a lot more and crying and doing normal baby stuff. And he was really not very active. And looking back now, we think maybe he had suffered some brain damage. Definitely toxic levels at that high. He suffered something that obviously was permanent in some way. Obviously Robin and I were so happy when the levels came down and we’re just going through this emotional rollercoaster. 

The doctors came to us I think the next day. And they sat us down and they said, we need to talk to you about what we’re gonna do, or what some options are. They said, because we feel he needs a transplant, a liver transplant. And if he doesn’t get it and this happens to him again, we’re pretty sure he’s not gonna survive it. So really when you hear something like that, that didn’t sound like an option to me. I didn’t hear a [00:17:00] question there. [laughing] That’s how I was thinking about it. Something that serious and that devastating and that critical, that’s something that needed is… My wife was just not happy about it, and she was just not taking it well.

David Hirsch: And so did Michael actually have the liver transplant then?

Mike Deleon: He did. Yeah. He did. So they put him on the list and we got the call. When you’re on the list for a transplant, they give you a pager. And with us, we never left the hospital after he was born. So we lived in a Ronald McDonald type house, just about a block away or so. And we never left the hospital. We never went home. So they gave us a pager, sent us back and said, as soon as something comes in this thing’s gonna go off and you need to get down here right away. We got the call like right around Christmas time, so there was an accident. We found out later it was a car accident. It was a nine-year-old girl that had been killed and that was the best option they had because of the size of her liver being the closest thing they could [00:18:00] get to fit in our son.

And so we got the call, went to the hospital. I think it was probably a 15- or 18-hour surgery. It was hell for us waiting and being in the waiting room, and I think about every four hours or so they would come out and just give us a little short brief update and get back in there. But anyway, we spent the next several weeks in the hospital after that just going through more hell. It was literally a rollercoaster in hell. And so I say that because at first it seemed like he was doing well. And then a few days later, he would take a nose dive and he would crash. And I don’t know why, but it seemed like when he did that, we were always back at the little Ronald McDonald room for the night. And we would be in a dead sleep and they would call us and they would say, you need to get down here right now because he’s not gonna make it through the night. And so this, [00:19:00] ah, this is the part that gets hard to talk about. [heavy sigh] Ah yeah, it was tough. And the thing that was hell about it was it wasn’t once, it wasn’t twice, it was several times. It just happened over and over.

And what I mean is that he would start doing well, we’d get that call. You better get down here. He’s not gonna make it through the night. We were just devastated. And then we’d get down there and we… We’re a family of faith and so we would be praying and we would be just crying [shuddering breath] and then he would do better. It was such a puzzle. It was so confusing. And then about a week later, he would crash again. And it was like somebody was playing out a tragedy and a portion of a horror story in your life and then rewinding it and playing it again. It was like, [00:20:00] okay, here we go again. We’re gonna loop around one more time. And, here we go. You better get down here because he’s not gonna make it through night. And then it was like, oh gosh. And then he would get better.

And so it was just [sniffing] the last time, I think it was the third time, third or fourth time I forget. But it was the worst one. And they were trying… They couldn’t find a vein because of the transplant he was so bloated. He was so filled. There was like edema everywhere. It was awful. And because he had crashed so many times, they had to find veins, a new vein to find a way to give him some more medicine or do some kind of treatment. And the last time they had to do some kind of surgery in his leg, in his foot. They had to cut him open and do a line in there. And I think it didn’t work and they had to go into his chest. And so there were… It was awful. They were [00:21:00] just slicing him up And it was bad.

So it wasn’t long after that we went back to the Ronald McDonald house. And again, he pulled out of that one. He seemed to start stabilizing. We went back to the Ronald McDonald House and it was just a couple of days after that, we’ve been back to see him since, and of course we’re close by. But they did approach us again and they said the only thing that’s keeping him alive are the machines. And so we had to make a decision and we’re, like I said, we’re a family of faith and we just didn’t want… The hardest thing we were gonna have to live with I think, for me anyway, was being the one to say, okay, turn the machine off. 

But I don’t know. I think sometimes prayers get answered. And we walked into the room that day, on the scheduled day to do it, and we knew we had to do it, and I had to tough through it. It had to be done. And if he’s not there, he is not there. If it’s a machine keeping him alive and that’s not being alive. [00:22:00] And so I picked him up. I got to hold him one more time. My wife got to hold him one more time, and she handed him back to me. And I just picked him up and I looked outside. And it was the strangest thing. It was just like this group of doves had flown up in the air. It’s Seattle, there’s pigeons everywhere. And right out that window, there was a whole flock of them and they were flying around outside. It was the craziest thing. And he passed away in my arms. He died. And they didn’t have to turn off the machine or anything else. So that’s a rough, it’s a rough story. 

David Hirsch: Yeah. Thank you for sharing it. Palpable, the story that you were sharing. All the challenges that he had in his very short life, right? Three months old. And my heart reaches out to you and Robin based on that experience, which took place literally two decades ago now. And how long was it [00:23:00] thereafter that Robin became pregnant and then Ariella was born? 

Mike Deleon: So my daughter was born in 2002, two years later. But it was different this time. We’re a little bit more prepared. She had an amniocentesis done when she could to let us know if she was for sure going to be affected. Nine months later here she was. 

David Hirsch: I’m curious to know if there was any complications surrounding Ariella’s birth. 

Mike Deleon: One of the things that did happen was she was breech and we were actually seeing a physician over in Long Beach. I cannot remember his first name, but his last name was Asra. Really nice guy. Very well known for high risk pregnancies. But really nice guy, really knowledgeable, super smart guy. Anyway, she was breech and he performed a version. They called it a version. It was a success. And [00:24:00] so we were happy about that. And other than that, nothing. Strangest thing that ever happened was some of the requests I got for food at one o’clock in the morning. [laughing]

David Hirsch: Did Ariella actually have a UCD diagnosis or not then?

Mike Deleon: She did. Of course we were seeing a high risk pregnancy physician. He knew what the possibility of the diagnosis was. And then because of the history being shared around the hospital, I don’t know what happened, but everybody in that hospital knew who we were. There was a lot of students there too. It was Long Beach, it was Southern California. And so I think half the kids in the UC system came that were doing fellowships or whatever. And when Robin delivered Ariella, there was a room full of people. And it was the weirdest thing because not only that, but then we were approached by a camera crew and a TV show and they wanted [00:25:00] to… They heard our story. And so it was, gosh, it was like this Hollywood production thing. And when my daughter was born one of the coolest things was that I got to deliver her. Or at least they let me think I did anyway. But that was really just an amazing opportunity and experience and I’m so glad that I got to do that.

But my daughter and I have always been really close. So after she was born, nothing. No hyperammonemic attack, no episode, no crisis, no high ammonias. She was checked. We knew. We knew that the possibility of this is very real and we knew good and what the consequences are. Nothing, nothing. Everything was great. Cried. She was awake, she would open her eyes. All the normal stuff. And so we went home.

I think it wasn’t until she was about two, two and a half, and one of the physicians she was talking to had said to try and breastfeed her as [00:26:00] long as it was feasible and possible. So Robin clung to that and I think she breastfed her until she was about three. And it wasn’t until she started introducing solid foods that Ellie got sick. My daughter we call her Ellie, her name is Ariella, but we call her Ellie. I’ve always called her that. She started getting sick and it was bad. It was really bad. It was bad, and it happened really fast. So once she realized she needed to breastfeed her even longer, cuz while she was on breast milk, she was doing fine. But we knew that that’s not sustainable.

So we started seeing the doctors again. We started talking and having conversations with them about what we could do. And there was nothing on the market, nothing. There was no medicine, no treatment for this. And a good chunk of the treatment for this is just sugar water. It’s a D10, it’s a dextrose. [00:27:00] They hang a dextrose bag and that’s really all it was. It was just D10, it was 10% dextrose. And that’s what they would treat urea cycle disorders with. They still do it. And the reason for that I think is because of something called the protein sparing effect. Sugar will slow down or maybe even prevent you from going into metabolism. So your body’s metabolism is either building up proteins, building up what it needs or tearing it down. 

And that’s the massive problem with the urea cycle disorder is that tearing down of the proteins. And you’ve got this excess of amino acids that aren’t built into proteins yet. And typically with you and I or anybody that doesn’t have a urea cycle disorder, that’s what the urea cycle does. It puts enzymes together in such a way that when it’s trying to get rid of this excess nitrogen in your body, if any one of [00:28:00] those enzymes is faulty or non-functional, it builds up as ammonia. It gets stuck in the state of ammonia, whereas you and I can convert it to urea and we pee it out. They can’t do that.

So it’s literally ammonia in your blood. Like the stuff you go buy at the hardware store or the stuff they make fertilizer out of. It’s that stuff and it’s in your body and it’s in your blood. And that’s what my son suffered from when he had a level of 1600 was he had that stuff coursing through his body and crosses over the blood brain barrier. And it just, it’s just devastating. A lot of boys don’t survive. And the ones that do, it’s pretty common that they don’t live very long. 

David Hirsch: So as it relates to Ariella’s situation, the way you described it, it showed up from a dietary standpoint initially. And I’m wondering if there’s some advice that you got beyond the sugar water that has been instrumental in her[00:29:00] development and being able to lead as close to a typical life as possible.

Mike Deleon: So up until she was about 10, I keep saying that there was nothing FDA approved. There was no medicine for this. They were just using D10 and it worked. But the problem with them, the problem with the other treatments, was that they were so horrible. They were so horrible to ingest orally. And just imagine having a daughter, having a child who is 3, 4, 5, 6, 7, 8, and her life has been nothing but drink this solvent-type gasoline-smelling, tasting medicine because you have to take it. So it was hell. 

David Hirsch: So was there a turning point then starting at age 10? Was there something different that transpired from a treatment standpoint or otherwise? 

Mike Deleon: There was a geneticist we were seeing in Southern California and he had heard about a study that was coming up for[00:30:00] this particular urea cycle disorder. We were just hoping and praying for the best, and gosh, I’m so glad we did that because two weeks after she got on it, completely different. Complete turnaround, 180-degree turnaround. She was doing well, she was doing great. My daughter was even at a point before this, she was actually diagnosed by a another geneticist over in San Diego. He had written her up as a failure to thrive. She was dying.

David Hirsch: Oh my.

Mike Deleon: Yeah, she was dying. And it wasn’t long after that that we found that physician in Southern California, and he’s the one that recommended this study to us. And so we got on it and just 180 turnaround. It was just a miracle. It was amazing. 

David Hirsch: So has she been on a much better path ever since that, from age 10 to now 19? 

Mike Deleon: Yes. It’s been pretty much a continuation of that ever since. The thing about urea cycle disorders is having a [00:31:00] UCD is definitely a stress on the body and it’s definitely a stress on your immune system. So it was pretty evident pretty fast that wasn’t gonna happen. So we ended up homeschooling her all the way through high school. Even after the med trial, which was about two years long, my wife was on it too. She was starting to be a lot more symptomatic. So what we’re finding out is there’s a lot of women out there that they were labeled carriers. And what happened to my wife is once she got to a certain age, and it seemed like menopause really was the real trigger, she started becoming like she was actually really experiencing the full effect of the UCD herself. She got a lot more symptomatic and she ended up having to go on medicine. She knew pretty young that she didn’t like meat. And back then, it was just okay she doesn’t like meat. They didn’t really force her to eat it cuz she got sick eating it. So my wife just self avoided not really knowing why. But [00:32:00] as it turns out, there’s several women out there that were carriers, and now they’re full-blown symptomatic and demonstrating higher ammonia levels and so they’re on medicine, too.

David Hirsch: Yeah. Thanks for sharing. It seems every time you turn around there’s a UCD, something going on, whether it was with Michael, your son, or Ariella, your daughter, and then like you were just describing with Robin herself. 

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now back to the conversation. [00:33:00] 

David Hirsch: I’d like to switch gears and talk about the work that you and Robin are doing in the name of the Connecting Families UCD Foundation. And I’m wondering out of curiosity, when did the organization formally start?

Mike Deleon: I think unofficially it started a few years after Michael had died. I think the hardest thing for me when Michael died was just there was no answers and this was so rare and it was so unexplainable and so confusing and so devastating that, I didn’t know it until later, but looking back now, I think my biggest issue with it was that I didn’t have anybody to talk to. I didn’t have anybody to explain this to me. I had doctors telling me the physiology and the anatomy and that’s not what I needed. That stuff doesn’t explain it to my heart. It doesn’t explain it to my brain, and them telling me how this works and what it affects and what’s gonna happen… that’s not helping me through it.[00:34:00] 

And I think the only thing I knew at the time, not really knowing then but now, is that I was never really gonna understand it until I talked to somebody else who’d been through it. And it was so hard to find anybody at all that I thought I was the only one on the planet. We knew nobody else. And so we decided to start giving our number, name and information to some of the physicians that we ran into, and said, please, if you find somebody or you have another patient, ask them if they’re willing to talk to us.

And lo and behold, one day we got a call. It was great. So great. My wife did all the talking. But I was listening in the background and it was just hearing somebody. I wasn’t even involved in the conversation, but just hearing them talk to each other, it helped a lot.

And so we spent many years doing exactly that, and we just kept finding more people and they [00:35:00] kept finding us. And so unofficially we were doing that kind of work, but it wasn’t until about 2015 that we decided to just file for the 501c3. We had some help and we did it. And now it’s just been life changing for us and I know it’s been really helpful and beneficial for a lot of families.

One of our missions is that we… [chuckles, sniffs] you can probably hear it in my voice, but it was literally just hell. I think hell would’ve been an upgrade. The one thing that bothered me so much about that was going through it by myself. And my wife too. When you have a child that passes away, mom and dad are going through two different things. The same thing happened to both of them, but the same way they’re processing is not happening to both of them. And so a lot of families don’t survive that. And not that I’m trying to toot our horn over here. Not at all. Believe [00:36:00] me, our son passing away was only the beginning of one hell. The other hell was trying to figure out how we were gonna stay together and manage to live our lives without taking it out on each other or, how are we gonna get through that? 

David Hirsch: So the organization began officially in 2015 when you got your 501c3 status. And I’m wondering what was the initial vision? What did you anticipate doing with the funds you raised or the resources that you had? 

Mike Deleon: We just didn’t want anybody to have to go through that hell we did. We just thought there was absolutely no excuse for that. There was no reason for that. It just made me mad. Something wasn’t in existence to at least put somebody together, put people together, because gosh, I think this would’ve been a whole lot different experience. And I mean that in a way of improvement. If there would’ve been somebody that would’ve called me or [00:37:00] I could have called or… That didn’t exist. 

There is another foundation out there that does cover urea cycle disorders. They do research. They don’t put families together. They don’t make events for families and kids and stuff like that. And that was the one thing that was needed so bad in this community and we wouldn’t find out until years later. But that’s been our mission, is that we’re not gonna stand by. We can do something about putting people together and making sure that they know that they’re not alone. There’s a whole huge community out there and, huge in the fact that we’ve been able to find people from all over the world and network ’em. 

And we created a place on a Facebook page that’s private. You’ve gotta answer some questions to get in there cuz you need to verify that. And we don’t allow industry or anybody else in there, just families and patients and even caregivers. But that’s their place, that’s for them. They help each other, they [00:38:00] answer each other’s questions. They meet each other. And with the funds we raise every year, we put on an annual family camp, and we fly families for free. They don’t pay anything. And we make sure that everything’s taken care of and we want people to come and we think that they need that, they deserve that. And the horrific part that happened to us… I’m not glad that it happened, but it would be a long time, but I’d be able to look back at it and see that there was actually a silver lining in it.

And I think what I’ve learned now is that there’s always a silver lining in a tragedy. I don’t know, sometimes I think life has to knock you to your knees so you can see it at the right level. And you can see that there’s something good that can come outta something bad. I’m just glad that we’re able to get these [00:39:00] families together. Every time I see a family at one of our camps, especially the kids, it’s that could have been my kid running around. And it’s healing for me. I just get to see these families and I’m getting to experience what I didn’t have by watching them and I’m glad that they’re able to get it.

And on top of the camps we do an annual conference. We call it the UCD Meetup. And we host those all over the place. We usually move around the country to try and make it easier for people that live in different parts of the country to get there a little easier. But again, we raise money so that families don’t have to pay to come. We pay for their meals and the hotels, and we have speakers there. They talk about specifics of urea cycle disorders. We have geneticists there, we have dieticians there. 

One of the other things we do there is we have an attorney who specializes in IEPs and 504s for… [00:40:00] Federal law allows for accommodations, especially with disabilities. And a lot of trouble with kids in school and not being accommodated with certain things and that’s violation of law technically. And so it’s a battle. But she comes to our events and she talks to parents who have kids in school. They’re having issues and it’s a learning experience. 

So the camp is usually in the first part of the year. We put that on and we fly families in from all over the place. And it’s just a time for fun. And a lot of these families they’ve never met each other before. And a lot of these kids have never met another family with kids like them before. So it’s just so awesome just watching them take off and run off into the woods and just go have fun. 

David Hirsch: Yeah. I really admire the work that you and Robin are doing. And you’d mentioned that there’s usually a silver lining. Sometimes you don’t see it right away. And I’ve heard it also expressed, Michael, that there’s a purpose in the pain. [00:41:00] You’ve been through some really painful experiences in your life, you and Robin have. And it seems like you found your purpose. The purpose is to assist other families. And while Michael’s very short life and his death after just three months is tragic, there’s no getting around that’ll leave a hole in your heart permanently. But that doesn’t mean that his life didn’t have an impact. In fact, this is the work that you’re doing and the name of the foundation is really part of the legacy that you’ve created. Not in his name in particular, but it’s been advanced by the experiences that you’ve had. And I think it’s just wonderful that you’ve been able to take something as tragic as the loss of a child and make a difference in the lives of dozens and dozens, hundreds and hundreds of other families.

And I’m hoping that there’s that ripple effect, right? That pebble that falls in the [00:42:00] water and that just keeps rippling out farther and farther, and that you’ll have a greater and greater impact as time goes by. So I’m thinking about advice now and I’m wondering if there’s any advice that you can offer a dad, not necessarily with a child that has UCD, but just a dad that finds himself on the short end of the stick, if you will, with a diagnosis or with a child with a rare disease. Is there any specific advice that you might be able to offer?

Mike Deleon: Oh gosh. I get asked that question sometimes and I don’t know that I ever really have anything super profound to say about that. All I can tell you is that I think because of learning early that you just don’t quit. Quitting is not an option and you work your butt off and you work harder than the next person because you just won’t be defeated.

I think the defeat started happening for [00:43:00] me early on. And I don’t think it takes living through that to be able to adopt a mindset of just not quitting. And I think that’s the one thing that got me through sometimes. Obviously, our faith was a huge part of that. Just the reinforcement and the encouragement that I could do it, that I could keep doing it. That God has a plan for us and I really believe that with all my heart. Even if you’re not a believer and that’s not for everybody, but for me it is. And I look back and I look at hearing something like that and I think look, something happened to me. I can’t explain it. I didn’t deserve it. Nobody in our family deserved it. My sons didn’t. My son didn’t deserve it. Robin’s son didn’t deserve it. And all you can do is [00:44:00] live your life knowing that any day could be the last day. And you need to be prepared in advance for how you’re gonna deal with some of the things that are gonna come at you that are gonna probably knock you to your knees. And the only thing that’s ever gotten me through wasn’t being prepared for something you can’t prepare for. It was just never quitting. 

David Hirsch: Yeah. Pearls of wisdom. You’re not the first person who’s mentioned that faith has played a really important role. Because without that, some people wouldn’t have the individual strength to persevere. So thanks for sharing. I’m wondering if there’s anything else you’d like to say before we wrap up.

Mike Deleon: I’ve had a hard time talking with other fathers out there. I get it. And I don’t get what they’re going through, but I have something I can share and I’m sure something that has been my experience can help someone else.

You’ve got a value in your experience that is [00:45:00] that light, that thing that I needed when I had nobody. I don’t know how to describe it or what to call it, and I’m not that sophisticated of a person. But I guess my point is that one of the biggest issues I have, one of the biggest things I notice is that there’s a lot of dads that just don’t talk. They don’t share what’s going on. They don’t know how to articulate what they’re going through. And I think for a long time, what happened to me was it felt like a sign of weakness. Like I was displaying or being vulnerable out there when I’m supposed to be the tough one and the strong one. 

And none of us are immune to tragedy and none of us are gonna be ever stronger than the forces of disaster and tragedy that happen to us. So it’s not like you can tough your way through that. And even your smallest experience can be so helpful for somebody else going [00:46:00] through something that it’s that important to talk. It’s that important to share. And for dads and husbands that are having a hard time… I didn’t realize how much harder my time was, and the way I was dealing with it came from not having anybody to talk to. It made all the difference when I was able to find someone and I would just encourage a lot of the dads out there, especially the ones that are hesitant, to get plugged into the right network and the right people that have been through that. Cuz people that have been through stuff like this can really give you a whole different way to look at the world and things you weren’t thinking about before. And some of those stories become words of encouragement for you, and sometimes that’s all you need just to get you through another day or a week or a month.

David Hirsch: It’s a great insight. And it’s the whole reason that we created the Special Fathers Network, this dad to dad mentoring program for fathers raising children with special needs. And we’re thrilled to have you as part of the network, given [00:47:00] the experience you have. And what I admire about you is that you’re very authentic. You’ve reflected and you acknowledge that you made it more difficult for yourself by isolating yourself or not communicating. And now you’ve done a 180 and you’re the one that’s helping others open up and communicate. So I think it’s beautiful. So let’s give a special shout out to our mutual friend, B.J. Viau at Horizon Therapeutics for making the introduction.

Mike Deleon: B.J. Viau. Hey BJ! And I’d also like to say hi to Tom D’Amato. 

David Hirsch: Yep. Both fabulous guys. We’re very thankful for our relationship with Horizon Therapeutics, one of our primary sponsors for the podcast and the organization. And if somebody wants to learn more about the UCD Family Foundation or to contact you, what’s the best way to do that?

Mike Deleon: We have a website at www.ucdfamily.org. We’ve got different resources up there. You can [00:48:00] learn about us, you can learn about what a urea cycle disorder is. On the main page, you can scroll down to an image of camp. It’s a picture that we actually took of a father and a son. That family on that picture, that’s the dad with face paint and his son next to him making big smiley faces. That family lives with four affected in one family, and they’re just an amazing family. You want to hear stories about resilience and just getting through hard stuff and living with some serious tragedies. There’s some families in there that would make my story look like nothing. Just a low level tragedy compared to theirs. There’s a video on there. If you click on that, you can watch our video about camp and you can learn pretty much anything. Our contact information’s on there and so I would just encourage people if they’re interested to go there.

David Hirsch: Excellent. We’ll be sure to [00:49:00] include that all in the show notes. And I did watch that video. It’s very moving. And that dad with the painted face, the whole family had painted faces for that matter, was very, very moving. So Michael, thank you for taking the time and many insights. As a reminder, Michael’s 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 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Michael, thanks again. 

Mike Deleon: Yeah. Thank you so much for having me. It was great being here today. 

Tom Couch: And thank you for listening to the [00:50:00] 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 match up with mentor fathers in a similar situation. It’s a great way for dads to support other 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 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 David@21stCenturyDads.org. 

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 [00:51:00] tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.