080 – Steve Mogul, Father of Two Daughters, Both with Very Rare Genetic Disorders
On this Special Fathers Network Dad to Dad podcast, host David Hirsch speaks with special father Steve Mogul, a financial advisor with UBS Financial Services and a father of two children who both have very rare developmental disorders. Hayley, is only one of 19 in the world who has a rare form of Smith–Magenis Syndrome. Bari, is one of only 19 in the world who have a mutated GRIN2B gene. It’s a very unique situation and Steve spells out the challenges that his family faces. He also offers other parents of kids with special needs some truly insightful advice. That’s all on this Dad to Dad podcast. To find out about Smith-Magenis syndrome go to:https://www.smsresearchfoundation.org, https://rarediseases.info.nih.gov/diseases/8197/smith-magenis-syndrome. To read about the GRIN@B gene, go to http://grin2b.com/about-grin2b/.
Dad to Dad 80 – Steve Mogul, Father of Two Daughters, Both with Very Rare Genetic Disorders
Steven Mogul: There’s going to be unimaginable challenges in raising a child with differences, whether it’s autistic, cerebral palsy down syndrome, it doesn’t matter if a child is different and we have to go about it differently. The only true way to do it. And I know it’s almost impossible to do. You’ll have to attempt. Try and put yourself in their shoes.
Tom Couch: That’s special father, Steve mogul, a financial representative, and a father of two children who both have very rare developmental disorders. Steve tells, host David Hirsch about the challenges of his life and offers other parents of kids with special needs. Some truly insightful advice.
That’s all on this dad to dad podcast. Here’s 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 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 listen in on this illuminating conversation between special father Steve Mogul and David Hirsch.
David Hirsch: I’m thrilled to be talking today with my friend, Steve Mogul of Northbrook, Illinois, who is a father of two girls and a fellow advisor with UBS financial services.
Steve, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Steven Mogul: You’re welcome. Thank you. Thank you for having me.
David Hirsch: You and your wife, Robin had been married for 23 years and other proud parents of two girls, Haley 21 and Barry 15 who have rare developmental disorders. Let’s start with some background.
Tell me, where did you grow up? Tell me something about your family.
Steven Mogul: I grew up in Northbrook, Illinois until I was about the age of 10 years old. I have two younger twin sisters to about 22 months younger than me. We moved to Northfield. I finished out my junior high school in Northfield and then went to neutral or high school.
After neutral high school, I went on to Drake university in Des Moines, Iowa. Uh, got a bachelor’s degree in political science, and then I can tenured right after that and got a master’s degree in arts and teaching. So I suppose I would have been qualified to teach, uh, High school history.
David Hirsch: Yes. Okay. Well, let’s go back.
Uh, and, uh, I’m sort of curious to know what it was like growing up with twin sisters who were younger than you.
Steven Mogul: You know, it was unique. They’re not identical, they’re fraternal, you know, it was a lot of fun, you know, back in the day where we were very, very close, we took a lot of family vacations and they were a very, very, very gifted.
My sister, Alyssa. Was a world champion five gated equestrian writer. Wow. My sister Joey in high school was a top 100 ranked women’s singles tennis player.
David Hirsch: Wow. Very talented, very talented.
Steven Mogul: They were both charismatic. Uh, they were both athletic. Uh, it was a lot of fun.
David Hirsch: That’s awesome. So there was horses and tennis in your growing up.
What was your passion or what was it that you were focused on?
Steven Mogul: Well, we all skied, we all did a lot of downhill, snow skiing. I enjoyed that, but I played in high school and college, a tremendous amount of pickup basketball. And that’s what I really enjoyed.
David Hirsch: Okay. I’m sort of curious to know, what did your dad do for a living?
Steven Mogul: My father was a real estate broker, so he was for the most part in charge of brokering, large plots of land, mostly farm land between the farmers and the home developers for most of the. Chicago major metropolitan areas. So most of the outlying communities and the residential development for the last 35, 40 years are for the most part.
A lot of it, not all of it, but a lot of it is because my father had made it happen. So a lot of gurney, Lakeville of living rooms full in hers, correct? Like bill Lyndon, Hearst, Elgin, Algonquin, crystal Lake Lake in the Hills, Schomburg, Naperville areas like that. The Sen Texas, the Poltys the Rylands would make deals for several hundred acres at a time.
My dad would put them together. That’s what he would do.
David Hirsch: That’s pretty cool. So when you were growing up, um, I’m sort of curious to know what type of relationship did you have with your dad?
Steven Mogul: When we were growing up, we had a very good relationship. He worked hard, you know, it was fun, but you know, that all changed after I came home from my freshmen year in.
College after my freshman year in college, that’s summer, their mother came together in the living room, gathered my two sisters myself and said, Hey, we’re going to get separated. And that kind of hit me as sort of like a, what socks, so to speak. You really didn’t see that one coming. But let me back up for a second because I want to discuss what my mom did, even though she technically didn’t work.
She did have significant influence in an area that wasn’t really discussed. So from my mom for years and years and years used to work for what it was known as the joint action committee it’s called the Jack pack. She was, I guess you could say a lobbyist spent most of our time here in Illinois with us to give you an example of how much influence she had during my sophomore year, I come home from fall break, just as any college kid comes home with a, you know, a huge duffel bag of dirty clothes.
Of course, you know, said mama I’m home. And.
David Hirsch: Here’s my laundry
Steven Mogul: and I dropped it on the ground, you know, come home from a five hour drive and sit on the couch, start watching TV. She says, I’m running into the shower. I’m like, okay. The phone rings. The person on the other end of the phone says, can I talk with honor mogul?
That was my mom’s first name honor, modal night. And I said, well, she’s busy right now. She, and he said, well, can you say so-and-so is calling? I said, Okay. So I run into her room and yell into the bathroom. I said, mom, someone’s on the phone for you. And she said, tell him, I’m busy. And I said, it’s George Mitchell.
And now keep in mind, I don’t know who anybody is at this particular point in time in my life. Cause I’m just wrapped up in college. I have no clue. She says, tell him, I’ll be right up. I get back on the phone. And I said, she’ll be right here. She picked up the phone and after she comes out and I said, who is that?
And she said the Senate majority leader. And I’m like, okay. And again, keep in mind. I, I still have no clue, but I assume find out later that. My mother was the number one Jewish political activist in the entire country for few years,
David Hirsch: that helps put things in perspective. She wasn’t just a housewife.
Steven Mogul: She would definitely wasn’t a housewife.
And she carried a significant amount of influence. Yeah. Yes, absolutely. So she, she kept active and she had significant things on her mind.
David Hirsch: That’s awesome. Uh, not only, you know, raising. You and your sisters, but, uh, you know, taking on the responsibility of representing, you know, Jewish people across the country, you know, in front of Congress.
Yes. It’s pretty admirable. But I think the way the story started was that you came home from school your freshman year and your parents dropped the bombshell on you that, Hey, we’re getting divorced. And that puts you guys down a different path.
Steven Mogul: It did. It did. And I wasn’t there during my freshman year. I had no idea what happened.
If anything happened during that year, my sisters had finished up their junior year at neutral high school. I finished up my freshman year at Drake university and they said, they’re getting separated. And I had no clue what was going on. They separated, we got told on a Friday, my dad moved out on the Sunday.
So that started. About a six, five and a half to six year, what ended in divorce? And it was what we, what I later found out for the most part, a very, very ugly divorce.
David Hirsch: Well, that’s very unfortunate. Um, that’s another thing we haven’t one comment as our parents divorced years at a much older age than mine, I was only sex.
I had no idea what really, what was going on. You’re the young adult, right? You’re college, probably college educated, you know, it’s got to look a lot different and, um, you know, it, uh, it just sad, you know, that, uh, two people that you lived together for 20 plus years in your situation, couldn’t figure out how to.
Navigate that slippery slope that we call marriage. And I’m wondering what impact that’s had on you or your sisters for that matter.
Steven Mogul: It’s had a profound impact on me and I think it’s had a profound impact on my sisters. My sister saw more of it on the day to day than I did because they were there for their junior and senior year at nuture high school.
And then they went off to college. So they got more of a firsthand look than I did for me. I got everything more after the fact, because I was away for most of it. But when the time came for me to make the decision to marry, so to speak, The divorce rate at that particular time was 50% back in 1994. When I asked my wife to marry me and I asked myself, okay, what makes me different from anybody else?
Everybody goes up to the alter to hope, uh, To wherever and saying, I love you. And this is forever. So I cannot separate myself from any other person anywhere. They’re all saying the same thing. No one says this is for a year. No one says this is for two years, and then we’re done this. Isn’t the trial basis type of thing.
So I was very, very scared and I didn’t want to become a statistic. So I made a commitment then and there that. This would always become my number one priority, no matter what came down the road, I didn’t know what was going to come down the road. You cannot see into the crystal ball, but I knew what I didn’t want.
I saw the pain. I saw the pain from other families and I knew what I didn’t want.
David Hirsch: Yeah. Well, that’s another thing that we have in common is that, uh, you don’t know what the future has to hold. They can’t connect the dots, looking forward. You can only look backwards, but if you’ve lived through that and it was a painful experience and it seems like it certainly was, I think it gives you extra resolve, right?
In your own situation, all of the things being equal. If you have control over the situation, or if you can influence a situation, they’re going to do whatever it is and your power to prevent that from happening to you. So maybe that’s a silver lining out of a situation that evolved with your parents. Um, is your dad’s dad?
Steven Mogul: No, my dad passed away January of 1999, uh, from non Hodgkin’s lymphoma. Yeah, I got, I actually got a call. I’m finishing up my master’s degree in October of 1992 from him saying, Hey, I’ve got cancer of some sort. I don’t know what it is yet. I was, uh, gonna graduate in December that year. And at the time I was actually selling Cutco cutlery, helping put myself through graduate school and going to go out to California and open up a division out there.
And I made the decision to come back and help him and his business. I came back, helped him in his business for a couple of years. And while he was obviously the owner of his business, he had a couple of partners that I didn’t seem to mesh well with.
David Hirsch: So. Okay. So when you think about your relationship with your dad, I’m wondering if there’s anything that comes to mind, some important lessons somebody said that still resonates with you today?
Steven Mogul: There’s a lot of different things that he said every Sunday. He tried to make that a family day, so to speak. So I try to constantly focus on my family when I was starting out in this business. As you know, David, from being further, along in this business than me, we were cold calling. And you know, when I was cold calling, we were selling CDs at the time.
David Hirsch: What could be easier just selling it. Right. Right.
Steven Mogul: Yeah. So at that time, interest rates were much,
David Hirsch: much higher. Right.
Steven Mogul: And typically I’d get in a little bit before eight, I believe after eight, but one of my clients at that particular time had come in, seen my hours that I was working. And he said something that was profound.
To me, it’s a time. And this was one of my clients who must’ve been in his mid eighties. And he said, Steve, I see how much you’re working and what you’re doing. And he said, Steven, what, you know something you said, I have a lot of friends that are passing away because of their age. I said, I’m listening. He said, one thing, none of them are saying to me when I visit them, none of them are saying I should have worked harder.
And I thought about that for a minute is when we get to the end of whatever it is that we get to do, any of us really think about, Hey, I should have spent more time at the office or, you know, God, I should have spent more time getting another client or this or that don’t get me wrong. Money’s important.
And being able to pay for the bills and. And, and being, having the resources to tend to your family’s important, but in the end, the family always comes first.
David Hirsch: So what changed as a result of that advice you got from this 80 plus year old client of yours? At that time,
Steven Mogul: it changed the dynamic that I saw everything.
When I got the call from my dad in October of 1992, my life changed from California to Illinois. And then when I started. Working and got the invoice or the suggestion or the wisdom from this 85 year old client money. Can’t be everything. It can’t, you have to focus on what truly is real. What’s there for you.
So that made it more tangible for me. Nick gave me better focus. That’s
David Hirsch: awesome. Well, those are words of wisdom. Hopefully that everybody would catch and not directly putting your dad. But what I think I heard you saying is your dad had a really good work ethic and it’s important to have a good work ethic, but like anything taken to an extreme, maybe not a healthy thing.
Correct. That’s what I heard you saying. Is there anything else that when you think about your dad, When you were growing up or maybe later in life that, uh, comes to
Steven Mogul: mind, we all make choices internally. Some good, some bad. I found out later, well, after the divorce that my dad had ended up cheating on my mother and I had confronted him well after the divorce, because I didn’t find out about this until long after.
And I said, why. Because it shattered a certain image I had in my father and he sat down and explained everything to me and I understood everything he was explaining to me, but I didn’t agree with it. And there’s a difference in what I just said. So while I can understand something, I don’t necessarily agree with it.
So. He broke an ethical, moral code. He knew it. I can understand why he did it. It doesn’t make it right. And it’s important to stay. In my opinion, on the ethical moral road, you have to be able to sleep with yourself, so to speak. You have to be able to look yourself in the mirror in the morning. There’s enough going on in this world, in your family, with your friends, that you have to be able to look yourself in the mirror and be okay with who you are as a person.
David Hirsch: That’s pretty powerful. Well, thanks for sharing. It sounds like, um, you learned a lot from your experience with your dad and like you’d said, um, and I often said this myself, uh, we can. Learn a lot from role models in life. You want to emulate the good ones and you want to live vicariously through those that are making mistakes.
You don’t make some of the same mistakes yourself. And I think that’s what I heard you say. You’re a better person because of that relationship you with, with your dad and some of the things you learned, the good things, then maybe the not so good things. So you’ve been able to channel that energy, that knowledge, that understanding in a positive direction for you and your family, which is.
Not something everybody’s able to do, which is great. So I’m thinking about your grandpa’s for a minute, maybe on your dad’s side and on your mom’s side. What if any influence did they have
Steven Mogul: my grandfather on my mother’s side, I never met ever, ever my grandfather on my father’s side lived to 91. He was an icon, so to speak, he was a lawyer and an insurance salesman, but he knew a tremendous amount.
And he was a leader in the community. When
David Hirsch: you say the community, the legal community, the Jewish community, or both. Okay.
Steven Mogul: Both so early, probably in his thirties. Maybe he says forties. The temple that he would belong to. There was some sort of division in the, in the temple. He organized the rabbi, a lot of the congregation to divide because everybody wasn’t happy for some reason.
And he founded the Beth emet synagogue sitting at rich and Dempster, Evanston, the free synagogue. He arranged for the purchase of land and the eventual building of the synagogue. My dad was a first, our mitzvah grandfather was the first president and he arranged for David Polish, who was the first rabbi.
David Hirsch: So it was really a leader.
Steven Mogul: It was a leader and he was a great lawyer and he was also a great. Insurance sales man. I was with the equitable for years and years and years.
David Hirsch: It sounds like you had a lot of respect for your grandpa mogul
Steven Mogul: and he also, he also loved loved fishing. Let me elaborate just for a second, not just going fishing you and I might do like Michigan charter boat.
Every year religiously, he’d go with his friends, his own age. Okay. Up to the Arctic circle.
David Hirsch: Oh my gosh.
Steven Mogul: Okay. You know, for a week he’d fish up there,
David Hirsch: hopefully during the summer.
Steven Mogul: I honestly, I can’t remember when, but you know, that was his idea of fishing.
David Hirsch: The reason I say that is that I have a very close family member.
My grandfather’s third wife who lives in trumps in Norway, which is in the Arctic circle. And we’ve been up there three times to visit once. Well, my grandfather was still alive when they were married once to grey my grandfather twice in the summer. And the Arctic circle is the land of the midnight sun, which the sun does not actually set.
It just goes down to the Verizon and then goes back up. Around the summer solstice and then the winter solstice, which is about, you know, mid December. The sun does not rise. So you don’t actually see the sun. It gets light like a dusk, but, uh, it’s dark at 18 hours of the day. So I’m going to guess that cramped mogul was probably going up sometime in the summer or when it was mostly light.
Cause they could fish probably all day long. Right?
Steven Mogul: Most unlikely he probably did, but yes, once a year religiously. Cause we went up to the architects circle for a week with his friends. Yes.
David Hirsch: So did that passion, his passion for fishing and maybe outdoors. Did that rub off on you at all?
Steven Mogul: Uh, I enjoy fishing.
I enjoy being outdoors. I enjoy bike riding. I don’t get a tremendous a chance to do that, but yes, I do enjoy that really. I really do. I will tell you that to the same level of my grandfather. Would I love to go up to the Arctic circle. Probably not the Arctic circle, but yes, I do like fishing. Yeah.
David Hirsch: Okay.
Well, thanks for sharing. It sounds like a influential role model. And for them, I remember in a prior conversation, um, your grandpa had two sons, your dad and your dad’s brother.
Steven Mogul: My dad, my dad’s brother. And both of them were extremely well. Educated in gifted as far as how, how, how they carried themselves.
My dad went to Oberlin, then he got his business degree from Northwestern. That’s my uncle went to Yale and my uncle is a very, very amicable person. He gets along with just about everybody. The problem is I don’t think there’s an IQ test that can properly measure him. And the reason I say this is when he went to Yale, I kid you not, he never lifted a book.
David Hirsch: Wow.
Steven Mogul: He just didn’t. Okay. He went to the university of Illinois school and, and he didn’t show up to any class at all. He just showed up to take exams. So. As a normal person, which I’m the normal person. You love to hate someone like that because you’re not normally gifted with that type of
David Hirsch: intelligence in the curve.
Steven Mogul: Right. That’s exactly. Well, he and I get together for lunch once in a while. And, you know, I asked him, you know, what’s your idea, you know, a fun and his passion is reading. So if you were ever to walk into his room, his bedroom, okay. There’s probably 150 to 200 books stacked on the floor, all around, easy, his idea of fun, you know, his doctorate level philosophy classes.
And I said, you know, Edward, you really have to watch what you say, because when you say that to a normal person, maybe they want to stick their tongue in an electrical outlet. I said, because that’s obviously nowhere near normal.
David Hirsch: So what did he do as a career?
Steven Mogul: He’s a criminal lawyer. He’s a criminal lawyer.
He never worked for any of the big firms. He only worked for himself. If you ever watched the old odd couple of shows, the person who dressed like a schlep with stuff coming out of their pockets all the time. Was that was
David Hirsch: that Oscar
Steven Mogul: I believe so. Yes. That’s him. He has a suit coat on and he always has stuff coming out of his pockets easily.
Um, but he’s genius. He, he’s literally a genius fun to be around. Fun to know. He’s just a very, very interesting guy I’ve known.
David Hirsch: Yeah. Well, it sounds like he’s played a role in your own development as well.
Steven Mogul: He has. Yes.
David Hirsch: Well, thanks for sharing. So I’m sort of curious to know, how did you and Robin meet?
Steven Mogul: We met, uh, if you can believe this David, on a blind date, we legitimately met on a blind date.
One of my ex-girlfriends had called me up and said, Hey, Steve, I’ve got someone I’d like you to meet my ex. And I had been friends for a long, long, long time. And I said, you know, okay, Tell me a little bit about her. And she said, well, this woman is coming off a two or three year engagement. And, and I immediately said, no, no.
I said, forget it. I am not a rebound. I said, I want to have nothing to do with this. Nothing. And then she went on and on and on and on. And I said, okay, fine. I’ll take it. Just shot. All right. And we went out and Robin was so nervous that first date and Robin was talking about her family, which is Robin has a family, which is just monstrous.
Cousins aunts, uncles. And by the second date, it was for the most part magic.
David Hirsch: And the rest is history pretty much. So you don’t hear very often these days. So people going out on blind dates, right? You hear more about people, trolling websites, looking for people and maybe judging people on their looks on their profiles, which are.
Usually not very accurate, but you know, enhanced just like a lot of things on social media. Yeah. Well, thanks for sharing. That’s a great story. I love it.
So let’s switch gears and talk about special needs on a personal level. And then beyond I’m sort of curious to know before the girls were diagnosed, did you arrive and have any. Connection to the special needs community.
Steven Mogul: None. Wow. None. Um, I, I mean, I went to neutral high school. I had known about some of the special needs students there.
I knew that some of them had down syndrome, but I really can’t say that at that particular time, I knew much about anything.
David Hirsch: So it would’ve been a tangental understanding about
Steven Mogul: tangental. And maybe when I took my masters in education class, we were mandated to take one special education course at that particular point in time.
But that was back in 1991 and I was in 1994, no 93, 94. So. If we’re talking about, you know, special education community and all that stuff, we’re not talking about significant levels of anything.
David Hirsch: Okay. So Hailey is your oldest she’s 21. And, um, how did her situation transpire it? Wasn’t like you knew something at the time of birth or did you
Steven Mogul: know?
No, Hailey, Hailey, Hailey was born. She wasn’t. No necessarily hitting all of her miles stones, like the books tell you that they’re supposed to hit. Oh, she was a little bit slower. And in about a year and a half, she was real authority chick. We brought her into the pediatrician. She was kind of half in half out of it type thing.
And the pediatrician said, Hey, take a right down the street too. Highland park hospital. We took a right down the street to Highland park hospital and then gotten around some IVs and everything. And our pediatrician said, Hey, listen, we’re going to have you go right down to children’s Memorial hospital.
So couple hours later, they arranged for an ambulance center down to children’s Memorial hospital on after about a week there and seeing. Several different specialists didn’t necessarily come up with an answer yet, but we knew something was, was different. What had happened was Hailey’s a lodge had dropped off the cliff at that particular point in time.
We couldn’t tell you why or anything else. So we’d seen. Everything from, uh, endocrine to geneticists, to top pediatrician, to all kinds of various different specialists in Thomas Memorial. And, and about a week later, because we went out on April 7th of 2000, and I remember that particular year Robin and I actually did our taxes right there at children’s Memorial hospital.
It is, it was right there, you know? Right, right. Prior to tax day.
David Hirsch: That’s how the journey began.
Steven Mogul: That’s how that journey began. Yes.
David Hirsch: So she’s 18 months had this sort of, Oh my gosh. Type experience, you know, through the hospital. And how did it transpire from there
Steven Mogul: over the next several years you had several more of these episodes happen.
Where, what happens is she gets, she gets a little bit sick, cough, cold flu. She doesn’t feel like eating. And all of a sudden her blood sugar drops off a cliff. She has to go into the hospital and get Ivied. We ended up at children’s Memorial. One time we ended up at Lutheran general, but more often than not, we ended up at children’s Memorial hospital.
And we, we determined after a few stays that, okay, this is a genetic. So we end up under the care of dr. Barbara Burton. Who’s the lead geneticist at children’s Memorial hospital. She runs a number of different tests. We even biopsy Hailey’s liver and some muscle, and then said, okay, we’ve got some w w we’ve got very little here, but I want you to go out to Duke medical center.
There’s some specialists out there. So we fly out to Duke medical center a couple of days and we come back
David Hirsch: a little bit, Haley B at this time, um,
Steven Mogul: Haley would have been probably four or five.
David Hirsch: Okay. So pretty dramatic, right. Taking a young child like that across the country.
Steven Mogul: Yep. Yup. And near the same time, probably within the year, that type of thing.
We fly out to the Cleveland clinic too, because there were other specialists and this is all under the guise of our top geneticists. Dr. Barbara Burton was saying, Hey, we’re still trying to get at the bottom of this. We don’t have exact yet. We’re still trying to get down to the bottom of this.
David Hirsch: So she’s leading the process, sending you here, sending you there.
Steven Mogul: Yes, she’s done all. She could hear. And she knows people across the country, in fact, across the world. So Robin and I go to talk to her and say, you know, what, what are the probabilities of something happening to a second child with Robin? And I are thinking about a second child. So we physically okay. Was sitting in front of Bergen getting genetic counseling because we know that whatever Haley has, which we don’t know.
Cannot be tested for you can do ambulance synthesis. You can do all kinds of different things or whatever Haley has. We know that it won’t be able to be tested for them. And dr. Burton says 75% chance. Everything will be fine. 25% chance it won’t. And Robin, and I said, well, odds are in her favor. Robin gets pregnant.
We have Barry. And before Barry’s one, she has an issue similar to Haley’s where she’s not feeling well, her blood sugar drops and we have to give her an Ivy of dextrose similar to sugar. So by the time Haley is no Barry’s four because there’s a six year difference. Dr. Burden. Has gone around the country several different times, speaking various different sites.
And she’s out in California and she is talking and she sparks the interest of the number one person of the undiagnosed disease person at the national Institute of health. They get to talking. And he says that, you know, the patients that you’re talking about, why don’t you send me the files? Send some of their files.
And while the undiagnosed disease program at the national Institute of health is very regimented and very selective, they take the girls
David Hirsch: well,
Steven Mogul: and normally it’s only for a week, but to take the girls for two weeks and back then, this is before we have all these genomic breakdowns that you can do right now, back then it costs.
The national Institute of health to do full genomic breakdown, $50,000 per patient. And they can only do it for 50 people. So they had to be very selective and they determined that Haley and Barry fit the criteria. So they broke it down. So they’re running all kinds of various different tests. There’s the auntie of the thing, all kinds of different things.
And they had determined. That Haley and Barry or breaking down sugar inside the mitochondria within the cell. Something they’ve never seen before, after we get back home after those two weeks, month or two later, dr. Burton calls us up and she says, you’re never gonna believe this. She says, Haley has Smith McGinnis syndrome.
David Hirsch: You’re like, well, what’s that? Well, or did you have any idea?
Steven Mogul: We had a, we had a vague idea because dr. Burton had already tested for that. Okay. And I said, dr. Burke, forgive me, but didn’t you already test Haley for that? She says, yes, we did test her for that. However, Haley does not have the Smith McGinnis syndrome where the gene is deleted.
Okay. And that’s where most of the patients fit into. She’s one of 19 in the world has got mutated.
David Hirsch: Well, if you don’t mind me asking, because I think most of our listeners would not understand what the difference between deleted and mutated is. What is the difference?
Steven Mogul: The difference is to put it simply if there are, let’s say 20 pieces in a gene, a deletion on that gene, you may only have 16 pieces.
That would be a deletion. So instead of all 20 pieces mutation, meaning instead of yeah, being straight up and down vertical, it would be curved, angular, not looking straight up and down. It’s mutated in some way, fashion form or shape. So Haley and I said to dr. Burton, I said, so Haley’s got the entire gene.
It’s just nutated. She said, yes, that’s exactly it. And I said on top of it, she’s only one of 19 in the world. Yes. Okay. So that just puts her new, a further rare category. Fast-forward a month or two later, I get another call from dr. Burton saying. Okay, hang on. I said, you won’t believe this. Barry has got a mutated grin to BG.
And I said, okay, what does that mean? Because you just spoke Egyptian to me. She said the grim to be gene is partially responsible for Parkinson’s Alzheimer’s and autism. And Barry’s one of 19. With a mutation on this particular gene, she doesn’t have any of these diseases, but she’s got the mutation on this particular gene, which is not normal.
I said, okay. So I said to dr. Burton, I said, so they’re breaking down sugar irregularly, and each one’s got this mutation on a different gene. I said, okay. Right. And I basically said, have we seen this before? She’s said, Steve, I can’t say that we have necessarily seen this before. She said the Smith McGuinness syndrome we have seen before, mostly in the deleted cases, but really, you know, when you look at the whole package, we really haven’t seen this before.
So we’re kind of carving our own forest. There are really no paths, so to speak
David Hirsch: all of the girls at this time,
Steven Mogul: When we started getting the partial diagnosis started when Haley was 10, everything started to come back into play when Haley started to become a young teenager and we got everything.
David Hirsch: And as a result of knowing what it is, how does that change things for you as far as what you and Robin are doing for the girls on a day to day, week to week basis?
Steven Mogul: It’s it’s, it’s difficult. It really is difficult. There are a lot of special needs kids, adults, whether you’re talking about cerebral palsy down syndrome, whatever you want to name all kinds of different things or autism, whether they’re mild, moderate, or severe, and you have trajectories out there. And you can guess within a certain band, how functional these kids will be, how independent these kids will be.
And we’ve kind of got no book on this because there’s so very few of them out there exactly.
David Hirsch: From an intellectual standpoint, where are they versus their age?
Steven Mogul: Haley, my 21 year old she’s verbal. She reads it about the third or fourth grade level. Our fine motor skills are not the best she can. It has problems writing.
She’s a whiz on the computer, meaning in the mouse, she can get basically anywhere she wants and the computer and the phone, she can do most things on the phone as far as apps and that type of thing.
David Hirsch: So from a. Physical and emotional perspective. Where is she relative to her age as well?
Steven Mogul: Very young, very young.
I mean, yeah, physically she’s five, five, about 170 pounds emotionally. She has issues. She knows that she’s different from all other kids. She knows that. She likes to socialize with people. She loves people. She fatigues easily. Her Smith McGuinness syndrome produces melatonin melatonin. She’s producing melatonin 24 hours a day.
When you and I go home tonight, eat dinner. Maybe watch something on the television, read a book, whatever we may do. Our body as we get closer and closer to bedtime will naturally produce melatonin. Our bodies will naturally get tired. We’ll go to bed in the morning. We stop her body. Doesn’t stop keeps producing.
So she needs to sleep during the day partially.
David Hirsch: So that’s an accommodation that is important for her. Is there anything that’d be done to reduce or stop the production of melatonin?
Steven Mogul: It’s a genetic thing. Okay. So we’ve tried all kinds of different things. We’ve, you know, she’s got the sleep doctor down at Lurie children’s hospital, um, with even natural sunlight
David Hirsch: that sounds complicated or challenging.
Steven Mogul: It is
David Hirsch: so, um, What’s Barry’s situation, as far as her, how her situation presents itself,
Steven Mogul: every situation as she is a freshman in high school this year, she’s non verbal. She may say a few different words. She’s got to talk or so to speak. She’ll get around. She’ll tell you what she wants, you know, with her hands, that type of thing.
I mean, there’s. No question, Barry cannot eat textured food for whatever reason. Well, we’ve had dozens and yeah, dozens of speech pathologists, try and help out. But for whatever reason, she can’t eat, test your food. So her food needs to be pureed or liquid one and or the other. Barry to this date, still drinks Elementum, which is the baby formula as liquid, so to speak.
But her lunch dinner is pureed food. Barry walks runs
David Hirsch: intellectually. Where is she relative to her being 15
Steven Mogul: difficult to say she’s probably around the second grade. She’s very. Smart. There’s a lot in our head. It’s difficult to get out. She’s very sociable. She wants to be around people. Does
David Hirsch: she use a computer or a device to communicate?
So she’s not
Steven Mogul: reading. Yeah. A smaller iPad that school has given her with a number of different things. So multiple different screens, whether it’s on water, I’m hungry, I’d like this, whatever it may be. But the funny thing is. As you can understand, she’ll use it at school. She won’t use it at home for whatever reason.
David Hirsch: Wow.
Steven Mogul: But whether where their kid is special leads or, or whether they’re not special needs, as you can appreciate David kids know how to take advantage of the parents that does not. Change, whether the kids are special needs or not,
David Hirsch: especially at that age. Right. They’re adolescents, right? They’ve Oh yeah.
They have some insights. Do they play you and Robin off of one another?
Steven Mogul: I don’t, I don’t necessarily know if they play off eat, whether it’s Robin or I, but they certainly, they certainly get away with more than what they couldn’t at school. Got it. No question.
David Hirsch: And what type of relationship to the girls have with one another?
Steven Mogul: Oh, you know, it, you know, it’s, it’s fine that, you know, they’re both always doing kind of the wrong thing. Barry’s doing her thing usually downstairs. Haley’s usually doing her thing up at the computer, you know, even when Haley melts down, for whatever reason, screaming, yelling, whatever she would never, ever.
Had Mary ever, ever, no matter what, and she could be screaming, she could be yelling, whatever it is, never ever had. Barry request, he doesn’t even care. She’s just, yeah, whatever I’m in front of my TV or I got, I’ve got my phone and I’m watching YouTube sound the music
David Hirsch: fine. So they get along and they don’t like pick on each other.
Maybe there’s an age difference or they’re not competing with them.
Steven Mogul: No. Once in awhile, you know, Haley will say, Hey, I don’t want her watching that on the TV, have her watched it on the portable DVD player. That’s about the extent of it. Okay. Pretty
David Hirsch: much. Is there any meaningful advice you’ve gotten? Not necessarily from dr.
Burton, but just more from a family management standpoint. How have you and Robin sort of, you know, sort of navigated this crazy situation that you’ve just described.
Steven Mogul: I will see if I can take you back, David, if I can take you back to when you had your first child, if you can remember back that far,
David Hirsch: like it was yesterday, 30 plus years ago.
Steven Mogul: So when I have clients that are having kids for the very first time, here’s what I tell them. Wonderful experience enjoy every second. But I said, here’s my suggestion. I said, everybody that you know, and that knows you is going to come at you with 30 different suggestions. His parents, your parents, uncles, aunts.
Friends neighbors about everything from wallpaper to toys, to close to everything. You’re going to get bombarded with everything. And I mean everything. And I said, stay United with your wife, just doing your wife. And that’s what I’ve tried to do with Robin all these years. And sometimes it’s difficult. It really is.
David Hirsch: Yeah. Well, I imagine it has to try your patience.
Steven Mogul: It does.
David Hirsch: Whether you,
Steven Mogul: no, one’s perfect. And I don’t claim to be perfect. I never have, but it’s difficult, but it always comes back to in the end, when you back everything up, what are your priorities? And it always comes down to family. It always comes down to family.
I’m committed to the family, you know, I’m not perfect. I try and do the best. I try and spend time with them. That’s it.
David Hirsch: Speaking of family, I’m wondering what impact the girls’ situations had on the rest of your family? You mentioned that Robin has a rather large family.
Steven Mogul: Um, it’s a profound impact. It really is profound.
Um, growing up with all of the cousins, which are basically just a little bit older and the girls, they would all make sure to make sure that they were always around the girls. They all know the girls love the girls around the girls constantly in some way, fashion form or shape. Whether it be once every couple of months, whatever it may be.
And sometimes they call them, FaceTime them, whatever it may be. Now, Haley, when she was finishing up her junior high, we had some issues in that last year. She wasn’t in school. And we, we actually were in Pittsburgh with both Haley and Barry, uh, at the children’s Institute doing two months of intensive therapy for both of them.
Hmm. And after that it was November, December, and then Haley started high school. And I called up some of our cousins. We have six main cousins, two girls, four, four boys. And I had to give you some example on the boys. I don’t know why it came out this way. One of the boys wears a size 17 shoes, six, three, Omar.
Yeah, but like 230 pounds, either one probably was a six, six one, two 20. And the other two boys are similar. I called up one, his name’s Spencer and they’re both great down to earth, down to earth guys. I said, I said, listen, Spencer being an overprotective parent. So to speak, I said, Haley starting high school.
I said, If I find out because Haley understands things that are going around around by her. If anyone uses the R word anywhere near her, I said, I want you and all the cousins to come in stuff, the kid in the locker lock it. And I said, I’ll take all the consequences. He said, dad, do you don’t have to worry about that, Steve.
He said, we’ll take care of it. We got Haley’s back always. Wow.
David Hirsch: So it’s nice that she had that support system, family support system in place. And, um, that’s like a godsend, you know, when you take a step back and think about it because who’s to say it’s
Steven Mogul: nice. It is nice.
David Hirsch: And it’s great to fall back on. Well, thanks for sharing.
I’m thinking about supporting organizations that you and your family have relied on. You refer to Lori’s children’s hospital a lot, right. As being sort of like the. GoTo place with all the resources that they have. I’m wondering if there’s any other organizations that, uh, you and Robin have relied on.
Steven Mogul: Uh, we’ve relied on, uh, Clearbrook Clearbrook um, is, uh, the organization that gives us respite and helps us for how we get, uh, You know, the little bit of money that we get for the nanny or the new respite work or whatever, it may be home services, home services.
Also, if we need money for behavioral services, they’ll provide that too while it’s not what I would call significant money, anything helps and it really does help. It is. And please keep in mind, David, as I’ve discussed with you, the girls. Have low tone. So they can’t feel the sensation of going to the washroom, so to speak.
So the state mandated, so to speak, pull ups or anything, or like paper. So there’s a lot of significant money out of my pocket getting the proper pull-ups for the girls every single year. So whatever money that Clearbrook or. The state or anything else, anything helps that’s
David Hirsch: thanks for making that point.
Um, I’m sort of curious to know where the girls bat mitzvah.
Steven Mogul: No, no. The girls were not bat mitzvah. No, we thought about it. Haley took one year, Sunday school. We had an individual teacher for her. It’s a difficult thing with the girls. They’re just very, very, very way out. They’re unique.
David Hirsch: Okay. The reason I ask is that I’m wondering, they must have been invited to maybe some of their cousins bar mitzvah, pop mitzvahs.
And I’m wondering if that issue came up or if that was a difficult issue for you and Robin.
Steven Mogul: We I’ve been invited to a lot of different weddings, a lot of different bar and bat mitzvahs. Unfortunately, it’s something that we’ve come to accept. And unfortunately for me, David, this is sort of like a mourning process of still trying to figure out I don’t have the magical answer.
I don’t, I don’t know. I mean, my, I have kids that I love to death and that I do anything for, but they’re not going to ever graduate college. Uh, they’re not going to ever get married. They’re not going to ever have grandkids. That’s the reality of it. So the first day you hope your child in the hospital, these are just normal hopes, normal dreams.
It’s it’s, it’s a mourning process. I just honestly don’t know how to do all of this. Sometimes I’m not Superman.
David Hirsch: Yeah. Well, It helps put things in perspective and we take a lot of things for granted. And I think one of the things I hear you saying, Steve, is that you and Robin don’t take a lot of things for granted, right?
Maybe you have a better appreciation for every day to day things. Right. And you know, you see all this around you, you know, with family and friends and work colleagues that, you know, are just sort of like. Coasting, almost coasting through life, you know, oblivious to what’s going on around them. Not because they’re bad people or they’re not sincere, but you know, they haven’t been confronted with some of the real things in life that you and Robin have had to confront.
And I think you’re just stronger people when I think about it. Not better, but you’re stronger.
Steven Mogul: I dot E a N. We’ve talked to several times, David, and honestly, I really, I try not to compare myself with other people. It’s very difficult when you make comparisons. I don’t take much for granted, as you know, it’s no longer a question of whether life is fair, life isn’t fair.
It just is whatever it is. You play the hand that you’re dealt. And I agree with you. I think it does make people. Stronger. I will tell you that while I certainly don’t know all of the ingredients for success that I, I think that one of them is humility. I always try. I always try my may not always get it right, but I always try and keep in mind.
What’s truly important in life. I mean, as I go home every day and look at it, And every day isn’t a cakewalk. It really isn’t. There were tough days, really tough days. And that’s it. And listen, it really does take a village to raise a kid.
David Hirsch: Yeah. Well, that’s from, markable my hats off to you and Robin for the commitment that you’ve made 80 to one another, right?
Which is your bedrock. And then to the girls, I honestly don’t know how you do it, but I admire you from a distance. So beyond your own personal experience, one of the things that I know that you’ve been super involved with is children’s Memorial serving as a volunteer. And I’m wondering if you can explain what it is that you do or what it is that you’ve done in your volunteer work there.
Steven Mogul: Hi, I’m after they saved Haley’s life back in April of 2000. I felt an ethical, moral issue personally, just to give back ever since then, Robin and I have been donating to the hospital in November of 2003, I got a call and was asked to join the foundation board. I didn’t ask join the foundation board.
They called me. And a few years later they asked me to join the. Children’s research fund. Now, there are people on these various different boards who joined the boards for resume building, no marking purposes. Purpose is contacts, uh, business relationships, wanting to get business, all that stuff that is of no interest to me.
Some people even have cards made up saying that they’re a board member, um, that that is of no interest. To me. My interest is 100% in the child and helping the child. Not that I advertise it, I really don’t advertise. And then I’m on two boards, but. I may get, get five or six unsolicited calls a year saying, Hey, Steve, my, my, my child, having these chest issues, I just cut in my pediatrician, said she needs to go see a cardiologist down at Lurie.
Children’s I just called the number. And you know, it’s going to take about three months. Can you do something? And, you know, I’ll make a call and, you know, Normally I can get them in within the next week type of thing. That’s my purpose and healthcare. Isn’t supposed to be like this. I know that. And it’s the same way for adults too, when adults need to see specialists too.
So I’m not there for business. I’m not there for, for resume builder. I’m only there to help kids. That’s it. And I’m okay there also to give back to an organization. That helped my kids and continues to help my kids. Yeah.
David Hirsch: It’s pretty powerful. And it just seems like the world is more black and white in your situation than it might be with other people, not good or bad.
It just seems more clear. Right. And your purpose and your focus is something we can all learn from. So thank you. I’m sort of wondering what role spirituality has played in your life and Robin’s life for that matter.
Steven Mogul: Spirituality has always played a role in my life. I’ve from early on, I went to Sunday school.
I, I got bar mitzvah. I got confirmed. I got, uh, married under the helper, so to speak. I’ve asked myself all of the various questions, a special needs dad would ask, would ask themselves. There are no good answers. No, one’s going to give you the proper answers. People will say, you know, God only gives you what you can handle.
And, you know, everyone says, well, that’s not true. True. No, one’s got the correct answer. I do believe in our spirituality. I do believe in a higher power. I certainly can’t tell you about a predetermined purpose as it goes well, above and beyond my IQ. I, I wish I could tell you about the why’s because I have plenty of wise and I would love to ask, but I can’t.
David Hirsch: Yeah, well, it’s evident that it has played an important role in your life. And, um, I just want to say thank you for sharing. I’m wondering under the category of advice, if there’s anything that comes to mind about raising a child with differences that you’d like to share with our listeners,
Steven Mogul: there’s going to be unimaginable challenges in raising a child with differences, whether it’s autistic, cerebral palsy.
Down syndrome. It doesn’t matter. And it’s going to be things that you can’t even imagine from the child doing something on an airplane that you couldn’t imagine to doing something to a wall, breaking it, breaking drywall while it’s going to be truly impossible. For you to put yourself in your child’s shoes, you have to throw the book out of the old set of rules, whatever book that you were raised on, so to speak.
And here’s what we do to raise kids. This, that the other thing you kind of have to throw that out because if a child is different, And we have to go about it differently. The only true way to do it. And I know almost impossible to do. You’ll have to attempt. That’s why I’m using the word attempt. Just try and put yourself in their shoes.
And I know that’s asking a tremendous this amount because here we are, as adults, we’ve only known one way to do things and now. We have a child that’s very, very different, but yet we want them to do things our way. And we’ve got an entire society that wants to do things our way. So I would ask you, and I know that I’m asking an impossibility to just attempt to try and put yourself in their shoes.
David Hirsch: See the world from their perspective.
Steven Mogul: It’s, it’s a very difficult task. I do understand that. I really do understand that, but it will help you as a parent going forward. At that point in time, you can’t play Hey by the world set of rules that they lay out for you. You have to play by your own set of
David Hirsch: rules.
That sounds like
Steven Mogul: do always what’s best for the kids. I apologize for interrupting David. And there are a lot of advocates out there for the family, for the kids, for the fathers. Good doctors. Like those at Lurie. Children’s good people like people like David here. Okay. There are. Lots of support groups, but a society wants you to be one way and your kid is designed differently for your child’s purpose.
You can’t play by society’s
David Hirsch: rules. Yeah. Well, you can try, but it sounds like you’d be very frustrated and maybe that’s part of the solution. Steve, is that, um, you understand what society expects? That’s because, you know, we have to navigate call it the real world, and then you have an understanding that that’s not how your family works.
Right. And you need to somehow reconcile those differences or adapt so that your family can move forward, that you can get. Through not just survive, but try to make the most of your situation so that you won’t look backwards and say, Hey, maybe we could, should have done something differently.
Steven Mogul: So, so that, that would be my 2 cents worth of suggestions, so to speak.
David Hirsch: Thank you. So why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Steven Mogul: When you find out that you’re a. Special needs father. It hits you like you’re in the middle of the Eisenhower, the Kennedy lead-ins highway, like a Mack truck coming at you. This is an unexpected segment.
No one plans for this. No, yes, you can plan for kids. I get that, but no one plans. For this particular event and the amount of knowledge, emotional stress, family stress that could go behind this is a mess. I mean, while yes, there’s special needs kids that. Do go onto graduate college that can function in society just fine.
I would think that a great majority of them don’t how do you deal with that emotionally? Okay. How do you, how do you deal with that longterm? There’s all the sudden is great. Big Boulder that just got placed on top of you now for the rest of your life. And you have to deal with it. And while you have to deal with it, you don’t have to necessarily deal with it alone.
There’s people that have gone through it with you. There’s resources. There’s groups, there’s advocates, there’s all kinds of different. What have you done around the country? So in these types of situations, it’s important to know that people are not alone.
David Hirsch: Yeah. Well, it’s great that you volunteered to be one of the mentor fathers and that you’re making yourself available to the extent that there’s anybody that can benefit from.
Your experience, your knowledge unlikely that they would have a similar situation to your own with two children, two daughters with special needs in such rare, special needs at that. But it’s just great that you’re willing to make herself available to somebody else. Who’s closer to the beginning of his journey, uh, who is the deer in the headlights.
Who’s maybe overwhelmed with his situation, that there is somebody to talk to. So let’s give a special shout out to our mutual friend and former work colleague, Dennis Drescher for connecting us that that dentist is a dentist is a wonderful guy.
Steven Mogul: He’s actually the reason that I’m here at UBS, he recruited me, he’s like family to me.
And he was actually in the hospital room holding my second daughter two days old.
David Hirsch: Wow. Yes. And a big advocate of what’s going on at children’s and both his wife,
Steven Mogul: Dawn.
David Hirsch: Is there anything else you’d like to say before we wrap up?
Steven Mogul: Just that, um, for all the special needs fathers out there while they are going 24 seven, and there is no stopping and sometimes it’s difficult.
There’s always people to help.
David Hirsch: That’s it. Great. If somebody wants to learn about Smith McGuinness, or the work that children’s Laurie’s children’s hospital does or contact you for that matter, what’s the best way about going and doing that?
Steven Mogul: They can get ahold of me at email@example.com or they can give me a call at (847) 498-7753.
David Hirsch: Well, thank you for making yourself available. Steve, thank you for your time. In many insights, as a reminder, Steve, that’s just one of the dads who has agreed to be a mentor father as 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. Hope you enjoyed the conversation as much as I did, as you probably know, the 21st Century Dads Foundation as a 501 c3 not for profit organization, which means we need your help to keep our content free. To all concerned, please consider making a tax deductible donation.
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Steve, thanks again.
Steven Mogul: Thank you.
Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network.
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 fathers to support fathers. Go to 21stcenturydads.org. That’s 21stcenturydads.org.
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