333 – Mazi Keyghobadi of Houston, TX Father Of A Son With Duchenne Muscular Dystrophy & Founder of Hope For Luka

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics mission at horizontherapeutics.com.

Mazi Keyghobadi: But the challenge is because, you know, it’s difficult for people to really think that a father like me, an ordinary guy, is really going to go and find some sort of a solution that big. But, you know, that is a real challenge because if I want to sum it up, it just feels like that pain constantly provides strength, yet there is more pain always.

Tom Couch: That’s our guest this week, Mazi Keyghobadi, a father and outspoken advocate for those with disabilities. Mazi is the father of Luka, 7, who has Duchenne Muscular Dystrophy. Mazi has also founded Hope for Luka, dedicated to finding and funding muscular dystrophy studies. And we’ll hear his family story on this Special Fathers Network Dad to Dad Podcast. Now, say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. Two short messages. First, I’d like to thank those who donated more than $1,000 and to the 2024 cycled and father Absence Campaign. In alphabetical order. They are Ina Byrd, Irene and Tom Costello, Kim Ducheswa, Damian Navarro, Brad Surratt, Don Stadler and UBS Financial Services. If you haven’t already done so, please go to 21stCenturyDads.org and donate today. Secondly, I’d like to invite you to attend the 4th Annual Special Fathers Network Mastermind Group weekend retreat taking place at the Hyatt Regency Chicago, September 6th through the 8th. Attendance is free for Special Fathers Network Mastermind Group Dads. Other dads can attend for a small cost. We’re budgeting for 30 dads this year and it’s sure to be a memorable experience for all involved. For more information, please see the show notes or simply go to 21stCenturyDads.org.

Tom Couch: Now let’s listen to this conversation between Mazi Keyghobadi and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Mazi Keyghobadi of Houston, Texas, a father and an outspoken advocate for individuals with disability. Mazi, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Mazi Keyghobadi: Thank you so much for having me here, David. I really appreciate it. I’m glad to be here.

David Hirsch: You and your ex-wife, Dunia, were married for nine years before being divorced in 2021. And are the proud parents of Luka, 7, who has Duchenne muscular dystrophy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Mazi Keyghobadi: I am originally from Iran, and I grew up. I was born in the north part of the country called Ramsar. And, I have three other brothers and a twin brother, you know, so that’s pretty cool. And, you know, I was there until I was 16. I was about 15, 16 years old. And then we migrated to the United States afterwards and been living here ever since.

David Hirsch: Great. And, out of curiosity, how did your family choose Houston, of all places in the United States?

Mazi Keyghobadi: Well, so it’s a funny story because initially one of our family members came to the United States, and that was back in the 90s. And I think back then, because the population, they chose Houston as a suitable, you know, placement, and then we just follow suit. So we all came to Houston because of that. Yeah.

David Hirsch: Excellent. So, out of curiosity, what does, or did your dad do for a living?

Mazi Keyghobadi: So, my dad was a university professor. He was a researcher, kind of an advocate almost, I would say, for breastfeeding. And, you know, he was very much encouraging women to breastfeed and nutrition in the field of nutrition.

David Hirsch: And did he, have the same job in Iran that he had in the United States? Or was he retired by the time he came over?

Mazi Keyghobadi: No, he was retired by the time he actually came over. So.

David Hirsch: Okay. And how would you describe your relationship with your dad?

Mazi Keyghobadi: Very subtle. My dad is an extremely quiet and introverted person, and he’s probably one of the kindest human being you would find. He’s very, very introverted and quiet and very kind. So our relationship has been a quiet one, I would say, but something that I would look up to and kind of took it, you know, as an example for myself. But I’m not that introverted, not like my dad.

David Hirsch: Okay, so when you think about your relationship with your dad, are there any important takeaways, a lesson learned, something you’ve tried to incorporate into your own fathering based on your experience with your dad?

Mazi Keyghobadi: Yes,

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Mazi Keyghobadi: I would say my dad has been always a realistic person, and I think the biggest gift that he gave me was honest answers when it comes to important questions. throughout my life that I asked my father, you know, about different subjects, and I never felt, even up to today, that he would sugarcoat or be afraid of, you know, saying something. So that was one of the things that I think really built my personality from the ground up. So it’s a part of him that is also running in us.

David Hirsch: So, okay, any other men that you looked up to when you were growing up, or as a young adult for that matter?

Mazi Keyghobadi: It was mostly my father because he was loved by a lot of people because, you know, he was very harmless. So we never felt, you know, aggression or anything like that when my father was around. So I think that was one of the biggest qualities. And so my father was probably the most influential.

David Hirsch: Okay, so my recollection was that, you went to Houston Community College.

Mazi Keyghobadi: Yes.

David Hirsch: And then, you attended the University of Houston and your goal was to pursue a career in biology. And I’m wondering, where did your career take you?

Mazi Keyghobadi: So, I did. I wanted to actually become a doctor back then. And that was something that I loved because my mom, prior to the time that she couldn’t work anymore due to, you know, religion, she was on earth. And my mom would just tell us stories because she wasn’t working. Since we were, you know, grew up, I never saw her working that. So that was the inspiration. But then, you know, that took turns and I realized at some point that, I’m more of a creative type. So I started approaching more on the business and making money marketing. And I actually found out that I’m very good, at, you know, reading situations and people. So I went into consumer behavior and analysis and market penetration. That was, I would say those words. I’ve been doing that for a long time. Then at some point I stopped actually working because I wanted to actually start a non profit and really push for answers. So I stopped working about two years. Again, I was kind of forced back into going back to work, but I wanted to do it differently this time. I didn’t want to shy away from my goals basically when it comes to the nonprofit. But along the way I was introduced to consciousness. Right now when it comes to the career, it’s a mixture of, you know, try to make money for my son, for my living. At the same time, try to do it in a conscious manner, meaning that, you know, be the right guy, be the guy that does the right things even if everybody else doesn’t, you know. So I believe there’s a, the right connection also between that and what I’m doing with my son.

David Hirsch: Yeah. Well, thanks for sharing. I appreciate it. Let’s talk about special needs first on a personal level and then beyond. And prior to becoming parents, did either of you have any connection to the world of disability? Or special needs?

Mazi Keyghobadi: No, I never experienced that actually prior to that. I mean, even in relatives where I’m thinking we didn’t have, anyone that had problem of that magnitude.

David Hirsch: So what is Luka’s diagnosis and how did it come about?

Mazi Keyghobadi: So his diagnosis is, as of right now, is Duchenne, but it’s a mild case of Duchenne. And it was complicated from the beginning because, he was diagnosed when he was 14 months old. And we took him to gastroenterologist because he was arching at night since he was little. And at some point it got really bad. So we thought it was something either with the liver or the stomach. And at that meeting, you know, my ex wife mentioned that he also has really tight, calf muscles that he doesn’t let go of. And it was just a part of a history that she was giving. We were lucky because Dr. Hines in Austin is probably the kindest and probably one of the best human beings when it comes to doctors that I’ve met. He’s very thorough. He immediately suspected something might be wrong with the muscles. So he ordered some CK level to be tested. They came back elevated, 6,500. Then from that point, it was like, okay, well, we gotta get this checked out. And we checked it. Result came back a month and a half later that it’s a Becker, meaning that the deletion is between 17 to 44. But because the pieces are connecting together the way they should, it’s not, more severe, but it’s more mild. So we got that diagnosis, but that one was changed to Duchenne, because when he turned about four, he started limping. And that was a bit too early. And I was also always worried about that because it was such a large deletion, that we might be missing something. Because the stuff that they’re saying, for a typical Becker, they’d be fine. They’d be walking. You’d probably barely see any symptoms. But

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Mazi Keyghobadi: when he started, having those symptoms, that’s where we knew, okay, we gotta take him back, to his neurologist. They saw it, they said, okay, well, we’re gonna change it. It’s a little too early for him to start showing symptoms. So when it changes to Duchenne that way you can explore any trials or anything like that that is available. And since then, even with that, that really doesn’t help because the deletion is very rare deletion. And a lot of, you know, researchers that are out there are for more severe cases. So that’s where the concentration is at.

David Hirsch: So was there genetic testing to determine the Duchenne muscular dystrophy diagnosis or. It’s not done by genetic testing.

Mazi Keyghobadi: It is genetic testing, yes. Blood tests.

David Hirsch: Okay, so when you first got the diagnosis, I’m wondering, what type of fears did you have as parents?

Mazi Keyghobadi: The moment that I got it the same day, I remember it very clearly because I didn’t comprehend it. It’s a shock. Just like, okay, well there is that bad news, but maybe we can do something about it. Maybe it’s not too bad, you know. And then I go home and the nighttime comes and you start researching and that’s where it hits. Because it’s a disease that causes, that really disables the entire body. It’s not something that you would experience, you know, no pain or like a cancer that’s going to finish so fast. You know, it is a prolonged, it’s something that, you know, this, this feeling is, you’re looking at your child at ah, this, you know, 14 month old ball of energy, this thing that you’ve been loving to death every day. And all of a sudden that thing is going to turn into something very horrific, you know. And that was where it really settled in, where, you know, the real panic kicked in. And I think that my first inner feeling was absolute panic. It was more terrifying than the pain itself that you know, your brain just goes into a shock. Your brain sees these things that it’s just not able to. So I had a big period on that part and then followed by anger and hope and then sorrow at some point and then a roller coaster of yes, we can, maybe we can’t.

David Hirsch: So was there some meaningful advice that you got early on that helped put the situation in perspective? Doctors, therapists, family members, people in the Duchenne community, any advice that, you know, helped you better understand the road ahead or to again maybe take some of the edge off of things.

Mazi Keyghobadi: To be honest with you, for me at least the experience unfolded in a way that the pain was so much initially, especially that even if anybody provided any meaningful advice, it just wouldn’t be heard. So unfortunately at that time it was a complete blockage in my head and my energy. I think one of the people that I can certainly say did give me meaningful advice was my twin brother. Because he always encouraged me from the beginning not to give up, because he knows me, he knows that, you know, a situation like this, I’m just not going to let it go. And he was always there. So that was a good, meaningful advice. When it comes to that, not to.

David Hirsch: Focus on the negative. But what have been some of the biggest challenges you’ve encountered so far?

Mazi Keyghobadi: The biggest challenge, I would say, is the lack of compassion that I encountered. It’s not a judgment towards anyone or any particular mindset. It is just the way it is. I’ve come to make peace with that. but the challenge is because it’s difficult for people to really think that a father like me, an ordinary guy, is really going to go and find some sort of a solution that big. But, you know, that is a real challenge because if I want to sum it up, it just feels like that pain constantly provides strength, yet there is more pain always.

David Hirsch: Yeah, well, I think that there is strength in understanding, in the pain. Right. And if you can somehow redirect that energy, which some people think of as negative energy, in a positive direction, then I think that sky’s the limit. Right. There’s nothing that can’t be done. And, I know that you’re very determined. That’s the one thing that I’ve learned in my understanding about your situation. So I would just say never doubt a man on a mission. Right. And you are definitely on a mission.

Mazi Keyghobadi: Thank you so much. I really appreciate that. That means a lot.

David Hirsch: What impact has Luka’s situation had on your marriage or on the extended family for that matter?

Mazi Keyghobadi: Sure. on the marriage, the only thing that I think might have had certain impact, but I don’t see

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Mazi Keyghobadi: it again, as a major. I think the marriage was just, you know, differences between two individuals. And, I understood that and I respected that. And I respect my ex wife as a human being. She’s a wonderful, wonderful mother. And, you know, knock on wood, I, I am forever grateful for that because the impact is forever. So because of that, I think we have been having very solid relationship, as in co parenting. And, I try to even be open minded and learn from her as much as I’m able to.

David Hirsch: How about your extended family? What impact has Luka’s situation had on them?

Mazi Keyghobadi: A lot. Because truth is one thing that I always stick to. So I don’t try to play it any other way. I think the initial impact that it had on my family was me being more aggressive and more. Of course, you know, you have a person that’s going through grief and then anger as a result. You know, why is this happening to me? Why is this my kid? Why is nobody doing anything? All that good stuff? So there is quite a bit of that in the beginning. And I do appreciate, you know, My family and relatives be impatient with that and you know, things like that. If you look at it from outside because to me it was just me crying for help. It was just desperation, pure desperation and despair I would say. But you know, to a person from the outside, they might not see it that way. They might see you as more of that person with drama or this and that, or you know, pity or self pity and stuff like that. So I would say that was the immediate impact on them. And then also I believe as the time passed, it has brought us together more. I believe the bond that I have with my other three brothers right now and my parents. I don’t think it would have been possible this fast and this strong due to, you know, four siblings, four boys growing up. What do you expect? There’s always, you know, ups and downs and tensions and stuff like that. But we are so synchronized at this point and I was always the driving force of that. But if it hadn’t been for their understanding and their patience and their open mindedness, I couldn’t do this alone, you know. So yeah, it’s that I would say.

David Hirsch: Well, thanks for sharing. That certainly is a silver lining in the story.

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.

David Hirsch: So I’m thinking about supporting organizations and I’m wondering, what organizations come to mind that you or your family have benefited from? Sure.

Mazi Keyghobadi: So there are a couple of organizations. Parent Project Muscular Dystrophy, there is Cure, Duchenne. And the reason first, initially I mentioned these two organizations. There is also Treat NMD, but that’s more for the scientific community. But PPMD, I really owe it to Ms. Pat Furlong. She is the person, the drive basically behind about seven, $800 million that’s being raised. She’s the true definition of a mother, a mother that has both kindness and drive. And that’s very difficult, you know, because when I have drive, kindness sometimes fades a little bit in the background when it gets too intense. But this woman is able to maintain that and it’s quite inspiring and then There is also Cure Duchenne. The, Miller family, they also have raised and are extremely active when it comes to research funding. They have a lot of information. So, it’s quite wonderful because you have these different organizations that are all parents led. What they do is they all try to basically fill a gap, you know, and also they do funding a lot for research and stuff like that. There’s Cure Duchenne, there’s Hercules Foundation, Seek them for assistance for travel. Because we were traveling with our son and at, some point we’re not doing financially that well, so we actually, ah, received help from them. Those two organizations especially are, I would say, two of the best out there because of what they have done, and it’s quite incredible.

David Hirsch: Yeah. Well, thanks for sharing. And I think the people that you made reference to, the four Longs, the Millers and others that are behind these organizations are like the angels that appear in our lives. Right. Maybe you don’t. Maybe you do realize it at the time, you know, what an influence that they’re having and, thank God for that.

Mazi Keyghobadi: Yes, yes.

David Hirsch: So let’s talk about hope for Luka. when was that started? What’s the mission of the organization?

Mazi Keyghobadi: So, we started that in October 31st of 2022. And our mission, basically prior to that, you know, as a parent, I was looking for different solutions. Anything, any trials, any studies that can help us. I came to the conclusion at some point, I think it was right at three years, mark, that, because of the type of deletion that my son has, there is nothing out there that caused me to seek for, you know, independent studies and stuff like that. And I did a lot of research, I contacted a lot of people. There wasn’t anything available or anyone, you know, any organization that would come in and say, okay, you know what, let’s try this, you know, and that’s where it kind of kicked in, you know, where, okay, maybe we should look at it that way. Create something that I can move in it and I can have other parents to move in it. The number one motivation was my son, but one motivation right after is to share in real time and to provide the same access in real time as it’s created and as it’s moving forward. So other parents like me, and there are quite a bit of them out there that are just at the mercy of companies willing to take their child in a study or not, can come in here, take it on their own hands and be an advocate of their own kid. You know, save your own kid and by doing that, you save others, you inspire others, you. Any piece of information on this type of muscular dystrophy, because there are so different, elements for the biggest gene in the body, which is dystrophin, is useful to anyone. So that’s our mission to fund, basically, parents like myself so they can actually get their scientists. You know, the parents might have to do a little bit of work because that’s typically how you can actually find information. I think no one can really find a good scientist or a good match for your kid unless if you really take that interest and do it yourself, you know?

David Hirsch: Thank you for sharing. I’m thinking about advice now, and I’m wondering what advice you can share with parents, specifically dads who find themselves with a recent diagnosis seek maybe fathers that are in the same situations.

Mazi Keyghobadi: You know, right now, I’m very blessed that I have, Tushar. You know, he’s from a different culture and different country, but there is this unspoken bond between us and this massive amount of understanding and respect because I know what he goes through daily, and he knows what I’m going through mentally. And there’s a certain understanding between us that has given me more confidence, giving me more hope.

David Hirsch: Is there anything else you’d like to say before we wrap up?

Mazi Keyghobadi: Yes. I do very much appreciate that you have reached out. I also want to thank Reena Watts because she was the one that initially did a, podcast with me, and she, you know, we were connected through her. So I do want to thank her for that very much. at moments like these, any type of help is never forgotten. I can tell you that with certainty. And I want to thank you for being patient with me. You know, I’m a younger guy, but, for having that belief in me to interview and to listen to me. So I really appreciate that understanding and, time. Yeah.

David Hirsch: Well, let’s give a special shout out to Reena Friedman Watts, host of the Better Call Daddy podcast, for helping connect us. She’s a superstar.

Mazi Keyghobadi: Yes, absolutely.

David Hirsch: If somebody wants to learn about your work or to contact you, what’s the best way to do so?

Mazi Keyghobadi: So my contact information, it is in our website, which is Hope4Luka, which is Luka is L U K A. And my contact. My cell phone number is actually on the, contact page. So they can directly, call me or text me. Also feel free to email me. They can actually contact me directly, you know, if they want to discuss anything or learn anything. Yeah. But I’ll, be happy to help in any way.

David Hirsch: I’ll be sure to include all that information in the show notes so it’ll make it as easy as possible for somebody to contact you. Mazi, thank you for your time and many insights. As a reminder, Mazi is just one of the dads who’s part of the Special Fathers Network 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 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

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David Hirsch: we need your help to keep our content free to all concerned. Would you please consider making a acceptable contribution? I would really appreciate your support. Mazi, thanks again.

Mazi Keyghobadi: Thank you so much David for having me. It was a pleasure.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children 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 group 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 tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.

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