403 – Swapna Sasidharan Of Schaumburg, IL Mother of 2 Including One With POGZ & Founder Of The Cure POGZ Disorder Foundation

Transcript:

Swapna Sasidharan: It did not bother my son that he could not walk any more than it bothered me that I cannot fly. He can be happy, so he chose happiness. And once you realize that, you stop caring about whether my son will go to college, whether he will drive a car, whether he will get married. It gives you peace of mind and relief. And those things are what gave me strength.

David Hirsch: That’s our guest this week, Swapna Sasidharan, vice President of Technology at ABCO holdings and founder of the CurePagsi Disorder Foundation. Swapna is the mother of two children, including her son Ved, 10, who has POG Z, a rare genetic disorder. We’ll hear all about Swapna and her amazing life on this 21st Century Special Fathers Network Dad to Dad Podcast.

Tom Couch: Dad to the dad. You’re not on your own. We walk this road together, heart and home.

David Hirsch: Now say hello to the founder of the 21st Century Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

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David Hirsch: Hi, I’m David Hirsch, host of the 21st Century Special Fathers Network Dad to Dad Podcast. The 21st Century Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books, and sharing heartfelt challenges. The Mastermind group is free for the first 30 days. Stop trying to figure out things on your own. I invite you to join one of the existing 21st Century Special Fathers Network Mastermind groups. You’ll meet some extraordinary dads, exchange a lot of best practices, and recharge your fatherhood battery for the journey ahead. it might just transform your life like it’s done for so many others. For more information, please see the show notes or Simply go to 21st Century Dads.

Tom Couch: Through every season, in every stride, great dads are present. 247365.

David Hirsch: Now let’s listen in to this conversation between Swapna Sasidharan and David Hirsch.

Swapna Sasadaran interviews for 21st Century Special Fathers Network

David Hirsch: I’m thrilled to be talking today with Swapna Sasidharan of Schaumburg, Illinois, who’s an engineer with APCO holdings, where she is VP of technology, founder and CEO of the CURE POG Z Disorder foundation, and mother of two, including a child with POG Z disorder. Swapna, thank you for taking the time to do a podcast interview for the 21st Century Special Fathers Network.

Swapna Sasidharan: Thank you, David. It’s an honor to be here.

David Hirsch: You and your husband Sandy have been married for 17 years and are the proud parents of daughter Sloca, 12, and son Ved, 10, who was diagnosed with POG Z, a rare genetic disorder characterized by developmental delays, cyclic Vomiting, autism, microcephaly, and gastronomical issues. Let’s start with some background. Where did you grow up? Tell me something about your family.

Swapna Sasidharan: I was born in Kerala, India. Kerala is the southernmost state in India. I grew up with my mom, dad, and my younger brother. I was in India till 2008. I did my bachelor’s there, and I was working, till 2008 in India, after which I got married and I moved to US my mom and dad are still in India, and my brother is married and settled in Michigan.

David Hirsch: So your parents are empty nesters. The birds have flown very far away from the nest.

Swapna Sasidharan: Yes, but they do visit often. I mean, you know, they come here, you know, every couple of years, and they stay with us with both of us. And we also go back to India. You know, we try to go every year or every two years.

David Hirsch: That’s fabulous. So I’m curious. No. What did your dad do or what does he do for a living?

Swapna Sasidharan: my dad was an engineer, so he worked in, telecom services. He is 73 now and is living a, peaceful, retired life in India.

David Hirsch: How would you describe your relationship with your dad?

Swapna Sasidharan: we have a pretty good relationship. We are pretty close. He worked very hard, and he raised, my brother and myself, along with my mom. And his work demanded a lot of hours, earlier, but he did make sure we spent enough quality time, enough, quality time with family. So we have a fairly close relationship.

David Hirsch: And, both you and your brother did follow in your dad’s footsteps because they’re both engineers.

Swapna Sasidharan: We are, yes.

David Hirsch: Any important takeaways from your relationship with your dad, lessons learned that you’ve tried to incorporate into your own parenting?

Swapna Sasidharan: not specifically into parenting, but my father is a, very positive guy. He has this ability to look at everything, positively. he has this philosophy of glass full versus, you

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Swapna Sasidharan: know, half empty, but it’s still the same glass. So he always taught us, you know, there are different ways of looking at the same circumstances.

David Hirsch: Well, you’ve done a very comprehensive job of, describing your dad. And my takeaway was that he’s very positive. Glass half full type of guy.

Swapna Sasidharan: Yeah.

David Hirsch: Persistence is very important. Not to give up. And what I think I heard you say about leadership, maybe he wasn’t very outspoken, but actions, speak louder than words. And he was a good role model from that perspective.

Swapna Sasidharan: Yes.

David Hirsch: So my recollection was that, you also got a master’s in information technology and management at IIT Illinois Institute of technology. your career actually started back in India with, Tata Alexei, where you’re a software engineer. And then you’ve had a number of different positions here in the Chicago area with PLC Corporation, RR Donnelly, Schneider Electric, Walgreens, Boots Alliance, GE Healthcare, before your more recent position at APCO holdings as a VP of Technology. So I’m sort of curious to know, how did you and Sandeep meet?

Swapna Sasidharan: so, yeah, we had a, ah, very typical arranged marriage in India. I was working there as a software engineer. so it’s typical for us to put our profiles in a matrimonial site by our parents. They, when we get to a certain age, our parents met, each other. They like the family. And then, Sandeep and myself, we connected, we talked. So we got engaged, married, and I came here. Yeah.

David Hirsch: Yeah. That’s amazing. It still baffles my mind that, these arranged marriages still take place.

Swapna Sasidharan: I know.

David Hirsch: You know, I don’t know anything different really, than, you know, based on US Standards, if you will. And, it’s really a fascinating process and it’s worked 17 years. Right? And counting. That’s fabulous.

Swapna Sasidharan: Yeah. Yeah.

Ved was diagnosed with Hobsby Syndrome when he was 10 months old

David Hirsch: Well, let’s talk about special needs first, on a personal level, prior to having children, did you or Sandeep have any connection to the world of disability or special needs?

Swapna Sasidharan: We did not. We did not have anybody in our family. We didn’t know anybody.

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

Swapna Sasidharan: So Ved is diagnosed with Hobsby Syndrome. It’s a rare, neurodevelopmental disorder. And he is 10 now, but it took a long time for us to get a diagnosis for him. We knew, you know, when he was 8 to 10 months old that he was not developing normally. He was challenged with meeting his earlier milestones. So we saw a lot of doctors, try to get different diagnosis. We eventually did genetic testing, but even the genetic testing came as inconclusive for us. So we were stuck. And since we didn’t really know anybody who was going through something similar, so we were stuck, basically. So, actually, I have to say that there are a few things that really, changed or changed our trajectory because we were sitting there stuck, not knowing what to do, and just giving him, therapies. but in December 2023, I received a book called the future is faster than you think. and that was actually a turning point in my life. This book had a very detailed chapter about how converging health care technology is going to transform the space in the next five to 10 years. And that was fascinating for me. I read that chapter and I haven’t moved forward. You know, this book has chapters of how not just healthcare, but all the amazing things that are going on in the world is going to transform the world. But I just got so stuck with that healthcare chapter. I learned about genes and antisense or glonucleotides and, and precision medicine and all of that. And from that point I started researching with all the different keywords I got from this book. and that’s what started my journey.

David Hirsch: That’s amazing.

What have been some of the biggest challenges you’ve encountered relating to parenting

Not to focus on the negative, but what have been some of the biggest challenges you’ve encountered relating to parenting?

Swapna Sasidharan: I would say we weren’t able to do the same things we used to do before, Wage was born. It took quite a lot of pre planning and initially, you know, we weren’t able to go out much at all, because it took a while for Ved to start walking. he walked only after, you know, he turned five and a half or six years old. So it was very, very difficult for us. so all, you know, the social gatherings and friends meet up, you, know, it was very difficult to participate in those. And our life was about this shock, that happened. An unpredicted life, and a little bit of an anger. And why is this happening to us? We have gone through that phase. and the biggest challenge

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Swapna Sasidharan: was Ved has something called cyclical vomiting. He throws up and this comes up just out of the blue. it’s not because he ate something, or it has a lot. It’s a lot triggered by stress. So then we started thinking about, okay, what is triggering his stress? And then we learned that, you know, sunlight is causing it. So he can’t be, out in direct sunlight. So all of that, you know, made our mobility even difficult. So we were most, you know, confined at home figuring all of this out. So those were some of the biggest challenges.

David Hirsch: Yeah. Well, thanks for sharing. It sounds like it’s been a journey. And, it sounds like you went through those, phases that people talk about. the denial, the anger, the uncertainty, the sadness.

Swapna Sasidharan: Yeah.

David Hirsch: Is Ved a pretty happy child?

Swapna Sasidharan: Oh, yes, he is a very happy child. he always chooses happiness. It’s a pleasure to be around him. so in the initial days, like till he was five or six years old, he did not react a lot. So he was there, but there were no emotions from him. But that changed and, you know, now he is. He makes his presence heard, I would say. And he is opinionated. though he can speak, he’s a little boss, and he’s mostly very happy. So, you know, that makes us very happy.

David Hirsch: I love that. I saw. I think it was, some of the videos at your website. You. He seemed like a very happy child.

Swapna Sasidharan: Yes.

David Hirsch: Yeah.

Swapna Sasidharan: yeah.

David Hirsch: We’ll be back with more of the conversation on the 21st Century 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 21st Century 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.

I’m curious what impact these challenges have had on your marriage or your extended family

Now back to the conversation.

David Hirsch: So I’m sort of curious to know what impact these, challenges have had on your marriage or your extended family, for that matter.

Swapna Sasidharan: Yeah, so it was very hard, you know, for both of us. You know, it’s easy to be happy together, you know, as a couple, but when unfortunate things happen, you know, it’s. It’s difficult to grieve together. You know, my husband and myself, we had our own ways of coping with the situation, so we couldn’t be sad together or we couldn’t cry together. So we went through some pretty dark times that I was, you know, internalizing this and, you know, figuring out my own way of how to cope with this, which could be like walks and, you know, long walks and. And sometimes, you know, letting it out and talking about it. And my husband coped with it in a different way. But over time, we were able to come stronger together, is what I would say. Stronger than how we were before. Yeah, that’s how I would. How, I would describe what we went through and where we are right now. But now we have, come together pretty strong as a family, and we are happy with what we have.

David Hirsch: Well, I’m really pleased to hear that. And it’s not uncommon that, two individuals like a husband and a wife would grieve in a different way and at a different rate. And you just need to give one another the grace or the flexibility to process what’s going on in their own way and not be judgmental or angry or, you know, opinionated about it. It’s a process, and, it sounds like you’ve worked through it. And like you said, you’re in a better place today. And you’re happy with your situation, right?

Swapna Sasidharan: Yeah, we have accepted it. Yeah.

David Hirsch: And you might not have asked for a child with a rare disease, but maybe knowing everything, you know now, you know, you’re just accepting of it. Right. And if you think about all the people that you’ve met. Right. And the experiences that you’ve had just because of the situation, you know, you’re in a much better place today. Right. You’re a much better human being than you would have been otherwise. Just floating along with two typical kids, you know, sort of blissfully carefree about, you know, important issues that affect a lot of people in the world.

Swapna Sasidharan: Yeah, yeah, totally.

In Illinois we have this early intervention program that was a huge help for us

David Hirsch: So I’m thinking about supporting organizations and I’m wondering what organizations come to mind that that is benefited from.

Swapna Sasidharan: Yeah. So, in Illinois we have this early intervention program that was a huge help for us. So, our pediatrician in the early days when we was not developing normally, she immediately referred us, to the early intervention group. So, Ved has received physical therapy, occupational therapy, you know, all of those therapies, in the early days, which has really, helped us

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Swapna Sasidharan: also. You know, he goes to Lourie Children’s Hospital. he goes to Rush University Medical center. so both those hospitals are very close to our heart. We have. You, know his neurologist is Dr. Elizabeth Burry Kravis, from Rush University Medical Center. she’s also a part of our scientific advisory board. she’s great. She’s an MD, PhD, and she very well understands what is happening in the research world and she can connect the dots between the research world and the translational medicine world. So her advice has been very, very helpful for us and she is with us in this journey. And also he goes to a behavioral therapy place in Schomburg called by your side. He gets physical therapy, occupational therapy, speech behavioral therapy, all of those there. so it’s not just like one, one institution, but it’s an ecosystem of, you know, the different care providers. and we also get some, you know, despite hours, because of the situation. So all of these has been, you know, really, really, helpful for us to navigate this, you know, this challenging time. Yeah.

David Hirsch: Thank you.

The CurePogsi Disorder foundation was founded in March of 2024

So let’s switch gears and talk about the CurePogsi Disorder foundation, which I understand you started In March of 2024, the mission of which is to urgently improve the lives of individuals and families affected by Pog Z gene disorders by funding and accelerating cutting edge science to discover treatments integral to our, Path to Cure while supporting and advocating for patients and families. I so admire the work that you’re doing.

Swapna Sasidharan: Thank you.

David Hirsch: You’re a mom, a wife, you have a real job. And somehow, some way, you’ve found the time and the bandwidth to put together this amazing organization. What was it that prompted you to throw your hat in the ring here?

Swapna Sasidharan: That was because I believe in prescription medicine. And I really believe that there is hope, for my son and other kids impacted, and also for other rare disease patients. It’s very hopeful to know that science and technology exists. But the sad part is, if you have a rare disease, the burden of bringing the funding is pretty much on the patient’s shoulders. it’s not financially incentivizing for a biotech or a pharma to jump in and do anything about this because a cure is possible. so that’s the mission, of this foundation. How can you create a cure for this, create the funding and develop a cure and administer it. And at the same time, while doing this, is it possible to create a blueprint so that other rare disease patients can also use that, as a path to cure?

David Hirsch: So you mentioned that the onus, for doing this type of work is not going to come from bioengineering or big pharma. It’s more on the shoulders of the families that are impacted. Is there a, estimated amount of money that you need to raise to be effective?

Swapna Sasidharan: Yes. so if we are to administer a gene therapy, from an academia setting, the cost would be, close to $5 million.

David Hirsch: $5 million is a lot of rupees.

Swapna Sasidharan: It is a lot of rupees.

David Hirsch: Yeah. Well, very amb. My sense is that, you’re close to the beginning of this journey. You know, having just started this a year and a half ago and that, you’re off to a great start. You’ve surrounded yourself with some amazing individuals and, you know, from your, lips to God’s ears, I’m hoping that, you’ll raise the funds, that’ll be required. You’ll get the, right, therapies and research in place and that if it’s meant to be, there will also be a cure for POG Z. And like you said, the work that you’re doing could serve as a blueprint. Right. for others so that, those that are able to support the work that you’re doing are not just investing to help VAD or those that are impacted directly by POG z. But other rare diseases as well.

David: Acceptance is not a linear process. So it’s not like I accepted it today

So I’m thinking about advice, and I’m wondering what advice, you can, can share with parents, moms or dads for that matter, when they’re confronted with this very heavy situation about learning that their child has a rare disease.

Swapna Sasidharan: Yeah, I think, you know, one of the best things to do, is to, you know, connect with, you know, similar parents who have been in the same boat, and podcasts like this. David, you know, is going to be a lifesaver for, you know, for parents like that. But in my situation, you know, I did not know anybody, and I did not know these networks exist. I was totally lost. so, you know, from what I have, you know, experienced, I, would say that, you know, going through that, initial phases of shock, you know, denial, sadness, you

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Swapna Sasidharan: know, it’s. It’s okay. You know, everybody goes through that. So. And I have gone through that. So I would say at a certain point, you know, having that acceptance helps. again, I will go back to Black Knight’s blog because he has a wonderful piece, you know, written about this, and it’s titled Accepting the Unacceptable. And acceptance is not a linear process. So it’s not like I accepted it today and from tomorrow I don’t have a heartache. it doesn’t work like that. it’s not a linear process. You just walk around a park, you see kids of similar age playing, and immediately you get a heartache. So it’s natural. and everybody goes through that. And there’s one more thing which I want to mention in that blog. And again, these are all Matt’s words and not my words. so Matt has written that, Matt’s son. So he realized at one point that it did not bother my son that he could not walk any more than it bothered me that I cannot fly. You know, it did not bother my son that he cannot walk any more than, you know, it bothered me. I cannot fly. He can be happy, so he chose happiness. And once you realize that, you know, you stop. Stop caring about, you know, whether my son will go to college, whether he will drive a car, whether he will get married. It gives you peace of mind and relief. And those, Those things are what gave me strength to cope with, you know, my situation. And, and that’s what I want to, you know, tell to your listeners, you know, if it helps anybody.

David Hirsch: Yeah. Well, thank you for sharing really, really crystal clear about this. A concept, of acceptance, not being surrender, but acknowledgement. It sounds so simple, right? When you articulate it. But it’s not like you could just read that sentence, hear those words, and bam, I’m. I’m in the place that I need to be. Right. Like you said, it’s a process. Right. You’re going through this metamorphosis of sorts.

Swapna Sasidharan: Yeah.

David Hirsch: I guess the sooner you could embrace that, the better, off you’re going to be. And you didn’t use the word expectations, but I think that’s a lot of what we’re talking about when you’re reconciling your expectations of yourself or for your child, for that matter, what they’re able to do or not able to do, and, just meet them where they’re at. Right. And this becomes a much smoother journey without a lot of heartache.

21st Century Special Fathers Network is a mentoring program for fathers raising children with special needs

So is there anything else you’d like to say before we wrap up?

Swapna Sasidharan: No, I think it has been a thorough conversation. What I have to tell you, David, is, you know, what you are doing is great. You know, these podcasts, it’s a free resource and very easily accessible and it really helps people. you know, there could be people like me who don’t know where to start or what to do, who are stuck. so. So, you know, I’m really, really, appreciative of what you are doing here. So thank you.

David Hirsch: Yeah. Very kind words. Let’s give a special shout out to Mike Thompson, one of my Bible study friends, for helping connect us.

Swapna Sasidharan: Yes, yes, Mike is great. I have met him. And thank you so much, Mike, for connecting us.

David Hirsch: If somebody wants to contact you or learn more about the Cure Pog Z Disorder foundation, what’s the best way to do so?

Swapna Sasidharan: so we have a website. Website. It’s www.curepoxydisorders.org. you can also reach me at 8 AH-475-329808 or email me at swapnaurepoxydisorders.org I’ll.

David Hirsch: Be sure to include all that information in, the show notes and I’ll make it as easy as possible for somebody to follow up.

Swapna Sasidharan: Thank you, David.

David Hirsch: Swapna, thank you for your time and many insights. As a reminder, Swapna is just one of the individuals who’s part of the 21st Century 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 21st Century Dads.org Thank you for listening to the latest episode of the 21st Century Special Fathers Network Data 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, Swapna. Thanks again.

Swapna Sasidharan: Thank you, David.

Tom Couch: Dad to the dead. You’re not on your own. We walk this road together, hard and home.

David Hirsch: And thank you for listening to the 21st Century Special Fathers Network Dad to Dad Podcast. The 21st Century 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

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David Hirsch: 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 21st.

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David Hirsch: Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Tune in again next week for another interview. Intriguing conversation on, the 21st Century Special Fathers Network Dad to Dad Podcast.

Tom Couch: Through every season, in every stride, great dads are present. 247-365-24-7365.

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