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Beata Tarasiuk – Part 1

Beata Tarasiuk – Part 1 of 2: CURE SYNGAP1 Volunteer and Ambassador to the Polish community, joins Jo to talk about Kasia, inclusion, genetic testing, and “coming out” after post-diagnostic grief.

Show Notes

In Part One of this interview, Beata and Jo discuss finding a school for Kasia and the tremendous choices and sacrifices parent caregivers must make in the face of a devastating diagnosis. Overcoming her own personal grief to go public about Kasia’s journey, Beata began sharing her story, and advocating internationally to help raise awareness of SYNGAP1-Related Disorders and the need for finding a cure.

Part 2 will be out in a couple of weeks!

If you liked this episode, please give our podcast 5 stars! All episodes are also available at ⁠⁠⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.

Kasia’s Warrior Story⁠⁠⁠

Connect with Beata:

Other Episode Links:

CURE SYNGAP1 Poland:

Connect with Jo:

CURE SYNGAP1 & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Connect with CURE SYNGAP1 (@cureSYNGAP1):

Syngap Global Network

Comments: ⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest… by Lesfm from Pixabay

Episode 039 – Part 1 SYNGAP1 Stories, February 27, 2026

#SYNGAP1StoriesKasia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp39 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #SYNGAP1Poland #SyngapPolska ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠#CitizenHealth #SyngapGlobalNetwork

Below is a transcript from the audio:

Beata Tarasiuk

I had children late in life. I was—Kasia was born when I was 38 years old. So I had this whole life before my children were born. I had a career, a successful career in education. I was very proud of it. I worked with community colleges.

Jo Ashline

Yahoo!

Beata Tarasiuk

Yay!

Jo Ashline

Community college professor in the house.

Beata Tarasiuk

Yay! So I taught community college for 10 years as well as an adjunct faculty. I built vocational programs for high school kids on the community colleges. I was absolutely loving my career and loving my job. And when Kasia was born, all that had to go away, unfortunately.

Jo Ashline

Right?

Beata Tarasiuk

You know. Because we did have to choose, as a family, what we’re going to do. When she was born, she was a difficult infant. In a way that she didn’t sleep during the day. So when she turned six weeks old, she stopped sleeping during the day and she didn’t sleep at all. So, as a six-week-old infant, she slept for eight hours in 24 hours, and that was only at night.

Jo Ashline

And if you have ever had an infant, which many of us have in this community, that is just kind of a nightmare. 

Hi there, welcome to SYNGAP1 Stories, a podcast dedicated to all things SYNGAP1 and rare disease. My name is Jo Ashline, and I’m your host for this episode. As the parent of Andrew, an adult child with SYNGAP1-related disorders, I know how important it is for our families to feel seen and heard, and for providers, educators, and researchers to get a glimpse into our lives so they may better serve our loved ones. I’m so grateful for the opportunity to connect with our beautiful and growing community and share stories from caregivers, siblings, and professionals that will remind us that we aren’t alone. Our children matter. And hope isn’t just on the horizon. It’s in all of us.

Hello, everyone. Welcome back to SYNGAP1 Stories. I’m your host, Jo Ashline. And I have the absolute joy and pleasure of interviewing as a guest today, Beata Tarasiuk, a very well-known member of our  CureSyngap1 community who volunteers passionately both here in the States and abroad in Poland. Welcome, Beata!

Beata Tarasiuk

Thank you, Asia. Many of you know Jo as Jo, but Jo is Asia. It’s our Polish Asia. And she’s well known in Poland as well. She was born in Poland. So we have that in common. I’m so happy to be here with you all. I love SYNGAP1 Stories. I’m probably your biggest fan.

Jo Ashline

And I get to co-host with Rainie. So this is only my second episode that I’m actually doing.

Beata Tarasiuk

I go way back to, you know… Amber, probably.

Jo Ashline

Yes, absolutely. From the beginning. I know you’re really great at promoting the podcast episodes. So I know when we publish this, you are going to promote the heck out of it.

So just one thought, I want to piggyback a little bit on what you just said. Beata and I share the same birth country, our motherland, Polska, Poland. Our stories are different. I came to America at the age of four. We were political refugees. We left Poland two weeks before martial law, whereas Beata came as a college graduate. She was in her early 20s and met her husband here in the States and stayed, had a family. But we both speak and write and read fluent Polish. So I thought for our Polish families in our beautiful country abroad, we would say a few words to them. Cześć, Beatka! Witam Ciebie!

Beata Tarasiuk

Cześć, Asiu! Witamy wszystkich w Polsce!

Jo Ashline

Witamy w Polsce, SYNGAP1!

Beata Tarasiuk

Our new logo, our new coalition… w Ameryce, ale również z innymi krajami na świecie. Witamy wszystkich!

Jo Ashline

Wszystkich i to jest takie piękne, że nas łączy wiadomo… Nie pięknie, że nas łączy choroba, ale pięknie, że nas łączy… język nasz, polski i nasz pierwszy kraj. I tak się cieszę, że możemy tu być razem.

So I just—I love that we have this in common. It’s so special to me. And I remember when I first met you years ago via Facebook. I think Mike was like, “Hey, there’s another Polish woman in the group. You have to meet her.” And he connected us. And I just—it was so special to me that not only was I connecting with other SYNGAP1 families, but I was connecting with a fellow—a poor, strong, Slavic woman.

Beata Tarasiuk

You don’t mess with us.

Jo Ashline

Don’t mess with us. And that means you, SYNGAP.

Beata Tarasiuk

No, SYNGAP can’t mess with us.

Jo Ashline

That’s right. That’s right. So I want to kind of first, you know, introduce everyone to your family. I know your family, but not everyone knows your family. So if you can just introduce us to your family members and your Syngapian and where you live. You don’t have to give us your home address. Otherwise, we’re all going to come visit, and you’re going to be bombarded with guests. But please introduce us to your family.

Beata Tarasiuk

So my name is Beata, as you know. I make an effort to meet as many Syngapians and the SYNGAP families as I can in US or in Poland. So, so we had a chance to meet in person, thankfully, in the last—in the conference in Los Angeles.

Jo Ashline

Yeah.

Beata Tarasiuk

So my husband and I live, and our two daughters, we live in Tucson in Arizona. My family, my whole family, is in Poland. And his parents are in Atlanta, in Georgia. So we’re all alone here in Tucson. So Kasia is eight years old and she does have a little sister. Milena, who is four years old, was born—actually her due date was exactly on Kasia’s SYNGAP1 diagnosis date.

Jo Ashline

That’s right.

Beata Tarasiuk

But she was a preemie—she was, she was, she was born a month early, but but um but yes she was. Her due date was on the Kasia’s diagnosis date. Kasia was diagnosed at three years old with SYNGAP1, and that was 2020. It’s been five years already and—well, the five years it has been. Yeah, a lot of a lot of things happen—good and bad—uh and uh and our lives just changed completely in the last five years right so um… My husband’s a doctor. He’s a pathologist at the University of Arizona, Banner University Medical Center. And we’re very proud of him. So he’s never online. You will never find him on any social media.

Jo Ashline

So you have to go to a conference to meet him in person.

Beata Tarasiuk

You have to go to a conference. 

Jo Ashline

That’s the only way. I remember that. I was like, “You’re real.”

Beata Tarasiuk

I know, a lot of people don’t believe he’s real. Our schedules are so opposite. All right. He works many hours and he sacrifices for our family a lot. And we’re very proud of him, but we don’t see him a lot. So yes, if you do want to see him and meet him, he’s real. He absolutely exists. You can call him on the phone. He will answer. Don’t call him in the morning.

Jo Ashline

That’s awesome. I don’t think anyone wants to be called in the morning. And I will say, I know someone else in your family who sacrifices a lot and works very hard, and that would be you, right? As the primary caregiver and the primary… I know you both care and love your children very deeply, but you do have very different roles day to day, right?

Beata Tarasiuk

Yes. 

Jo Ashline

And as the primary caregiver and the primary sort of… hit-the-ground-running advocate in your family, you are also incredibly busy and hardworking. And I just want to make sure that we acknowledge that because, um, you know, we’re all balancing either our personal lives, our home lives, our professional lives, a combination of the two. But yeah, you are—and you are all over the place, aren’t you? If you’re not—if you’re not doing things in Arizona, you’re flying out to Colorado or to the hospital. You’re flying out to Poland to expand the community there. So tell us a little bit about your role with CureSyngap1.

Beata Tarasiuk

So my role with CureSyngap1 is so complicated. I feel like, you know, I can’t put myself in any of the categories because I’m truly everywhere. So let me tell you a little bit about my background. So I… I had children late in life. I was—Kasia was born when I was 38 years old. So I had this whole life before my children were born. I had a career, successful career in education. I was very proud of it. I worked with community colleges.

Jo Ashline

Yahoo!

Beata Tarasiuk

Yay!

Jo Ashline

Community college professor in the house.

Beata Tarasiuk

Yay! So I taught community college for 10 years as well. As an adjunct faculty, I built vocational programs for high school kids on the community colleges. I was absolutely loving my career. And loving my job. And when Kasia was born, all that had to go away, unfortunately.

Jo Ashline

Right.

Beata Tarasiuk

So. Because we did have to choose, as a family, what we’re going to do. When she was born, she was… she was a difficult infant. In a way that she didn’t sleep during the day. So when she turned six weeks old, she stopped sleeping during the day and she didn’t sleep at all. So, as a six-week-old infant, she slept for eight hours in 24 hours. And that was only at night.

Jo Ashline

And if you have ever had an infant, which many of us have in this community—this is just kind of a nightmare, right? Because as new moms, we are waiting for that tiny bit of time where we can maybe pee by ourselves and you know, eat that stale bagel on the counter and have a sip of our coffee that’s been microwaved five times. Right and so you weren’t having that at all.

Beata Tarasiuk

No, no. And you know, being this—this older mom that didn’t have friends with children, didn’t have, you know, a lot of the experience with children. I am the baby in the family. I didn’t have any younger cousins. I just didn’t know how—how just raising a child will be. Yeah. So that was very complicated and very difficult. And, um, I was planning to go back to work. We didn’t know she’s sick. She’s—she just didn’t sleep. And then, you know, we started with the delays. We had the—we hit the six months old and she started—she had nystagmus, which is a shaking of the eyes.

Jo Ashline

Yeah.

Beata Tarasiuk

And then with the sitting and the crawling and everything else. We had more delays and more delays. So, my return to work was delayed and, eventually, when she was about two years old, she was two years old and I think maybe two months when we finally found a daycare for her. That’s that would take her, because daycares don’t take children who are not walking. She wasn’t walking. So, I think if this is a good tip for somebody who… who has tiny, tiny little children, with SYNGAP, and they’re not walking. Um, the place that actually will take the developmentally challenged and delayed children is Head Start, regardless of the financial situation of the parents. 

Jo Ashline

Great tip, everyone. Great tip.

Beata Tarasiuk

Head Start has to take 10% or more children with disabilities. So and that—and if the child does have a disability, those rules about walking and potty training and everything else do not apply. So if you’re struggling, you don’t know what to do with your baby, and you need to put the baby in a daycare, Head Start will be your way to go.

Jo Ashline

Yeah. And I just wanted to—sorry for interrupting. What I wanted to mention is, you know, we are in 2026. Right. And we have heard these terms like inclusion and community integration. And we are still struggling from the very beginning as parents to find an inclusive, safe, welcoming environment for even our littlest with disabilities. And I just let that sit for a minute, right? Because we still have such a long way to go as a society, right? And it’s people like you, Beata, that are out there, um, pounding the pavement and getting it done and then sharing that information. And I know you’ve been through it with some things lately that I do want to come back to during our episode with respect to Kasia’s school. And there’s been just a lot of heartbreak for you guys in that capacity. And just, I think it’s important to talk about the fact that once we start advocating, we really can’t ever stop. There’s no… time to be complacent and sometimes we make a lot of progress, and then unfortunately that progress can be taken away. So, just the fact that, at such a young age, you couldn’t find—that was a big stressor for you, as a parent, for both of you, as parents, is… is really heartbreaking, right? You’re just like, “This is my child. I love my child. Where does she belong?” And society saying, “Well, sorry, not really anywhere.” Right?

Beata Tarasiuk

No, no. We had a nanny for a while. But… I just wanted her to be in school, you know, because I wanted her to be in school. I wanted her to be around other children. You know, having a nanny, it’s a set of another challenge. It’s very expensive to have a nanny. So it’s not for everybody. And it has challenges as well. So we thought she would be better off really in a school setting, in a daycare setting. Finally we did have—we found that place within the Head Start, and we… and she went to school and everything was great for about four months. She adjusted. We were thinking, okay, things are going well. At that time, we’re thinking she’s delayed, she’s gonna catch up. Nothing’s wrong with her. We’ve done many, many tests, many, many tests, as most of the SYNGAP parents do. Nothing came back positive. Everything was… everything was negative. All the tests were negative.

Jo Ashline

The tests were coming back normal. And yet everything you were seeing and living through was anything but normal.

Beata Tarasiuk

Anything but normal. And everybody said, at the time, you know, it’s because she’s not talking, because she’s not walking. She has to walk first. She’s not walking because of nystagmus. And we don’t know why the nystagmus. There’s no… there’s no source for that. We don’t know, but she has nystagmus, so she’s not walking. Her balance is off. So there were a lot of excuses for what is going on. So at that time, we still thought she’s going to catch up. So she went to school and, you know, life was… semi-normal and then what happened? Everybody had the pandemic. Shutdown happened.

Jo Ashline

And you really got to know Kasia on a whole new level. As all parents, we all got to know our kids on a whole new level during the pandemic, right?

Beata Tarasiuk

So the pandemic happened. And of course, we got shut down. We were shut down for five months. Then we had that, you know, those decisions to make, whether to put her back in the school when it opened or what to do. We did end up putting her back. But, you know, it was just really… off and on, school at that time, as many parents know. If you live through it, it’s the kids were less in school than more more in school because every runny nose was covered—suspicious. And yeah, and—and of course, you know, kids get sick all the time. So um, so yes, so it went on and on and uh, and then finally we did do the genetic testing. And we found out at three years old that she has a SYNGAP1 mutation. Um, and then we decided…

Jo Ashline

And then you found out how rare it was.

Beata Tarasiuk

And then we found out how rare it was.

Jo Ashline

All right. That’s the next one.

Beata Tarasiuk

And then we decided, as a family, that it’s really not feasible for me to go back to work. This is a lifelong condition. She’s not going to get better. She’s going to get worse. Um, we learned that she’s not going to die of it, but it’s a lifelong struggle. And that’s how we found out about the SYNGAP1 community in the U.S. at the time. At the time, Syngap Research Fund—at the time we had 600 people in a world with SYNGAP1 mutation. And I think every parent who was diagnosed, has a child with the SYNGAP1 diagnosis, I think we all know where we were, what we’re doing, when our… life changed completely. And we also know how many patients are there at the time. So now we have over 1,700, which is just a mind-blowing number for me because at 600—so this is what we knew: 600 people. Ultra rare disease. Of course, there’s no treatment. We thought there would be never any treatment because who would treat 600 people in the world?

Jo Ashline

Right.

Beata Tarasiuk

And then, um, we actually got connected. I got connected with the community the first day, the diagnosis day. So I was in this—I was in this patient group. The Developmental Delays Group. And, uh, Jess… follow me. She just found me. And she messaged me and she said, “Listen, I know you from this group.” Um, I was—I maybe posted one thing in that group because we were very private back then. You’re not—you know, I was not online. I didn’t do, you know, public speeches and presentations, you know, very private, very very, you know, just kept to ourselves. And she found me and she messaged me: “Join the SYNGAP1 community.” And I said—and I was thinking, who is she? How did she find me? Who are those people?

Jo Ashline

You know what’s so funny is that reminds me of when we were diagnosed and our story was different. I always—I always reflect on those of you who were diagnosed in the early, early years because your emotions are very similar to what we felt when Andrew was two years old and diagnosed with what I call his “a la carte” diagnosis. So his severe autism, right? His epilepsy, his developmental delay—global developmental delay—his intellectual disability. We had all these separate diagnoses coming at us by age two. And I felt that same level of shock and devastation. And also, you know, we knew there were things wrong, but we didn’t—we didn’t—maybe we just weren’t expecting this level of—of severity. Right. So I always think about that because when we were finally diagnosed with SYNGAP1, our story was very different, right? Andrew was 16 years old and we had been on the hunt for many, many, many years. Like all the tests were coming back normal. The genetic testing, nothing ever came up. And we had a new epileptologist and he’s like, “Let’s just keep going. Let’s try to figure this out.” And so, when we were diagnosed, we felt relief, which is not something you feel when you’re a kid—it’s very young. So I have like this perspective of like, I relate to those feelings of devastation, because we had that when Andrew was two, but it wasn’t from the SYNGAP diagnosis. It was all the stuff, right? Then, at 16, when we got the diagnosis, it was like, holy crap, we finally have an answer for why, right? But like you, and I was not private. I was already advocating online many years for autism and all these other conditions. So I immediately went home, dried my tears, and was like, “Oh my God, everyone! We finally have the thing we’ve been waiting for our whole lives.” Right. Um, and I posted about it, and a few days later, the Hardings messaged me. Aaron and Monica. And they were like, “Hey, by the way, we’re in California too. And we have a son with SYNGAP.” And I was like, “What?” And that’s how I learned about SRF at the time—now CureSyngap1. And so sometimes not being private pays off, right? Because… we had experiences where someone was like, “Oh my gosh, guess what? There’s others like you.”

Beata Tarasiuk

It absolutely pays off, you know. I can’t imagine my life private anymore because I think it would hurt my child. I think it’s in her benefit to be public. 

Jo Ashline

That’s beautiful. 

Beata Tarasiuk

And to talk about her. 

Jo Ashline

Wow. I love that. 

Beata Tarasiuk

Because if you don’t know her, you will never care for her. You have to know her.

Jo Ashline

That’s beautiful.

Beata Tarasiuk

You have to get to know her.

Jo Ashline

You can’t make me cry this early in the episode. I know.

Beata Tarasiuk

That’s not fair. Which is my goal. You have to wait. My goal is not to cry.

Jo Ashline

I love that. What a beautiful, important perspective. It’s okay. We all process things differently. I don’t think anyone is judging people who are not ready to or wanting to be more public with their story. But I think those of us who are willing—we have to just keep sharing and showing up. Because that’s how everyone else finds us and realizes we’re rare, but we’re not alone. You know, those are two very different things. Rare and alone are very different.

Beata Tarasiuk

Very different and—for me, being a private person, it was very, very difficult to do that. And I remember speaking to Monica Harding because I… I spoke to her the first day. I spoke to Mike. I spoke to Monica. I spoke to Jess. They’re all kind of pounced on me.

Jo Ashline

As they do. I love it. I love that they all pounced on you. They’re so good at that. Yeah.

Beata Tarasiuk

And—and I was just so—I mean, I was in a black hole for a long time. And speaking, you know, in private to Monica, to Jess, to, you know, to Mike, to different people, you know, I decided that, okay, this is very, very serious. And, you know, from all the advice I got—especially talking to Monica, you know, she’s very good about, you know, “this is what we do, you know, that this is not—you may not do the same thing,” and things like that.

Jo Ashline

“Here’s our story. If something here resonates with you um, and you feel like it’s applicable—great. And if not, that’s okay.” Right, and that’s okay.

Beata Tarasiuk

That’s the best approach. Yeah, you know, that there was—you know, there was Mike who was like, pushing. Like, “Then sign up for Ciitizen. Sign up for Ciitizen.” And I’m like, I don’t know what Ciitizen is. Like, I don’t—what it is? 

Jo Ashline

Who cares? Just do it. You don’t have to know what you’re doing. Just do it. Yeah.

Beata Tarasiuk

This overwhelming just feeling. And then you don’t know anybody, you know, and they’re just like… and to even accept the goodwill of people and this kindness and this absolute, you know, just willingness to surround you by love and care. It was overwhelming. I have to say it was overwhelming. And I just… you know, I listened. I spent two weeks in bed just crying. And I read, I think, the Facebook group, you know—the Global Network first Facebook group. I think I—I’ve read all the posts from the beginning of the group to—to the end. I think twice. Um. I’ve—I’ve studied. I—I talked to people and—and decided that you know I will choose the openness. I will choose to be out.

Jo Ashline

And by choosing, you’re also—when you said you were overwhelmed and it was the kind—even the kindness was overwhelming, right? I think part of that is also because it makes it more real.

Beata Tarasiuk

Mm-hmm.

Jo Ashline

Right? It’s like, not that you were ever in denial because you were always looking for answers from the beginning, but almost like, “Well, if I accept this kindness and I become a member of this community, I am… I am choosing to accept what is happening.” And that doesn’t come so easily, right? We think it does, but it doesn’t. It’s not saying I don’t accept my child, but accepting… this path that you’re being told they are on, this trajectory—that’s very different and very difficult.

Beata Tarasiuk

It’s very, very difficult. You know, people will tell you, “You’re going to find community.” And, you know, when you’re in this situation, you think, “What do I care? My child is so sick, this is—this is lifelong.” Sentence, yeah. And then you are—when you actually dive into it, you’re… you’ll see what a treasure this is. And what a life raft this is.

Jo Ashline

Yeah.

Beata Tarasiuk

And—and and how this helps you with, you know, survival, really. I mean, the first months is just survival.

Jo Ashline

I mean, like, go do that autopilot.

Beata Tarasiuk

Life after diagnosis is just absolute survival. You know, Kasia didn’t have any diagnosis except for the developmental delay and—so she received an autism diagnosis two weeks after—well, no, a week after her SYNGAP diagnosis because I was advised by the community, you know, “You need to get ABA therapy right away for her.” And the way you get ABA therapy is you need to get evaluated for autism. And chances are she does have autism. And sure enough, we did get evaluated for autism. We did get an autism diagnosis and we did get ABA therapy that turned out to be life-changing for us too. I mean, this is a great, great therapy for—for her at this stage of her life.

Jo Ashline

Yes.

Beata Tarasiuk

So this—this “coming out,” you know, it’s almost like you’re—you’re coming out of the closet because you have to change your identity. Your identity until this time was—you know, my identity. I was still a new mom, you know, like my identity of being a mother was still forming. So now I have to change the identity of being a mother of a disabled child, severely disabled child. And if you know anything about psychology… that change of identities is… extraordinary hard. And it’s harder than people even think. Even if you change it for better, that’s hard. But this is very—life-changing in a—in a—in a very profound way.

Jo Ashline

So were you worried about what that meant in terms of how people would see you?

Beata Tarasiuk

Yes.

Jo Ashline

Was that part of it?

Beata Tarasiuk

That was part of it. That was—you know, I was grieving at the time: my life, my professional life, my career. You know, because it’s—you know, when you grow up as a strong Polish woman and you get educated to the point that you want to cry and you don’t want to take another class in your life, you know, and you feel obligated to use your degrees. Because we’re immigrants now and we have—we have a great history of Polish immigrants into the United States, but we also have this history of people being construction workers, maids, and, you know, cleaning ladies and not professionals. And I wanted to be a professional. I wanted to be first in this generation to come to America and—and work professionally and losing my degrees. So all of this… and I did, and—and and I was very proud of that. Right. Now to change this, my identity of being… I thought the baby would add to my life, not take anything away. I thought, “You know, I really wanted to have a baby, and I thought it would just add to my life.” And now I had to deal with this grief of… I lost all that. I now have to be “Mom” for this very sick child and I have to be a wife and I have to take care of my marriage—because we know marriages do fall apart, and the extra stress—yes, you know. 

Jo Ashline

You said something really important, and I think there’s a lot of stigma around the honesty that exists, being honest about the—you know, we sort of tend to bleed it all together when we talk about the difficulties and the hardships that we’re… somehow negating the love we have for our children. And I just want to go on record here and say that is so not true. And so, when you said something… I think a lot of us can relate to what you just said, which is: “I wanted a baby to add to my life, not to take away.” It’s not that Kasia, the human, was taking away, but—no—all right. And so, it’s all of these… but I think people misunderstand when we are honest in this way, right? People think, “Well, how could you think that way?” It’s not about the actual person, the baby that we love, that we would die for, right? No questions asked. It is about the sudden 180-degree change in our responsibilities, in expectations, and now you’re telling us that my baby is going to… have these challenges in a society that is not ready yet to meet my baby where my baby is. And I’m going to have to not only provide, you know, 24/7 caregiving, but I’m going to have to also find an additional 24 hours in the day to advocate, to try to make that caregiving easier and to carve a path for my baby. So when my baby gets older, they have opportunities. They can be educated in a safe, inclusive environment. You know, that they have access to the right medications and doctors and opportunities. That’s the stuff.

Beata Tarasiuk

That’s the stuff. I want to say that everybody hears it loud and clear: I will choose her over and over again. I will choose her over and over again. So this is not…

Jo Ashline

But what you said is so important because we have to be able to be honest with each other.

Beata Tarasiuk

Yeah, we have to be honest. And nobody talks about it, that this grief of this diagnosis has so many levels. It’s not only, you know, the biggest grief. I mean, we—we always talk about this grief of the future for our child. And that’s the biggest grief. And that will always be the biggest grief. But we’re human.

Jo Ashline

We have for our kids when they’re born. You dream big for your babies, right? And so having to—having to be told, “Listen, most of the dreams you’re having for your kids…” Those aren’t really within the scope of reason right now or ever. That’s hard. And something about grief stages, I will say, too, that doesn’t stop. Right. And I’m not saying this to scare people because we have a huge age gap between our two kids. Right. Kasia’s eight. Andrew will be 24 next month in March. I can’t believe that. He’s going to be the age I was when I had him. But, you know, um, the grief doesn’t go away; it does change, as grief tends to do, right in any capacity, grief does, and so the things I grieved when he was Kasia’s age I grieve—I don’t grieve as much anymore. I grieve other things. Um, and I get up better and better about not like living in that grief space. I kind of acknowledge it, like, “Okay, today is a hard day. I’m going to have to take grief with me because I have things to do.” You have to come with me, and we’re going to figure it out together. Um, but I don’t try to stop it or—or—and I don’t try to make sense of it. I just kind of go, “Okay, today’s one of those days where I’m going to feel all the big feelings.” And then, hopefully, the next day will be a little bit easier because of it, you know. So, yeah, grief’s the big deal.

Beata Tarasiuk

Grief’s a big deal and you know we choose our children. You know, like I… you know, in this grief story, I’ve thought many times, you know, would I be happier if I didn’t have her? No. Every single time I choose her, I would have had her. Absolutely. I would.

Jo Ashline

But it’s okay to say, “I wish she didn’t have…”

Beata Tarasiuk

I did. I wish. I wish she didn’t have SYNGAP. You know, I’m often jealous of people that say, “Oh, you know, SYNGAP maybe made me a better person. SYNGAP, you know, SYNGAP enriched my life in many ways.” And I don’t think it did for me. I really don’t.

Jo Ashline

And that is so important for you to share because every… everyone has a right to their experience and to share it. And someone out there relates to what you just said. And they’re thinking, “Okay. That means that I’m not by myself in thinking this really didn’t improve my life in all these magical ways.” And we do tend to over time—has Andrew, has caring for Andrew instilled in me a higher level of empathy and patience and appreciation for the small things? Absolutely. But I also recognize, like, my son didn’t come into this world to make me a better person. His existence is way more important than that. And so I don’t want to minimize his life to say that he was here just to make me better because I was crappy to begin with, right? That’s not really doing his existence and his right to his own identity justice. But have I learned? Have you learned? Yes. And you have to acknowledge that. Right. But it’s okay to say, “Gosh, I wish I didn’t have to learn it this way,” though. Right.

Beata Tarasiuk

Every five minutes I say—I say the same thing. Like, “I’m done with lessons.” God, just let me go. I’ve learned, I’ve learned enough. So, so it’s, you know, it’s—I, when I think about this, you know, like I think God, I wish, you know, that it made me a better person, but it didn’t, you know? But… when I think about my daughter, I think… I am so grateful she came to me and she chose me.

Jo Ashline

Right. That’s so beautiful about that. That’s so beautiful. She did. She chose so well. What an incredible mama bear she has. You know, you are the epitome of—of just like you took those few weeks. Like you said, you stayed in bed for two weeks. You kind of had to think things over. It was a really hard month. You were wallowing in all the feelings that you were having. And then, man, once you got out of bed, boy, did you get out of bed. Didn’t you? You really, like—I want to talk a little bit more about some of the ways that you have shown up, not just for Kasia and your family, but for other families in the SYNGAP community. So I kind of want to start with some of the things that you do for… CureSyngap1 here in the States. And then I’d love to talk about what you’re doing in Poland, so can you share?

Beata Tarasiuk

Let me tell. Let me, because it has something to do with you, Jo. Okay, hold on. Should I pour it? When Ed asked me to do this podcast, I said, “I want to do it with Jo because I have a story about Jo to tell.”

Jo Ashline

So, um, you’re not the only one that has stories about me, by the way. But I’m going to let you share this one.

Beata Tarasiuk

And it has to do with the Polish community. So hang on. Hang on. We’re waiting there. So we, you know, it did take… it did take… little bit for me to—to get it together. And then we—I know it was a “coming out” story, you know, on the Facebook, we did a fundraiser. We, you know, I said, “This is what’s happening.” This is who I am now. This is what’s happening to Kasia.

We raised some money, you know. And again, when you come to CureSyngap1 community, it’s so intimidating, too, because… okay, my fundraiser on Facebook brought like $3,500 while Mike’s fundraiser at the same time brought $35,000. So you think… I will never be able to do anything. I mean, this is so much, you know, like there’s so much greater, so much better than I am. I mean, those people are just absolutely incredible. Then you can’t think that way. You have to think, what can you do? What value can you bring? And you—everybody—has a unique value. Everybody has something that they can do. And—and you have to think about it. So I thought about it. You know, it’s a process for me how to engage with the SYNGAP community and CureSyngap1 because I don’t feel like I’m… really… fit any of the little categories, you know?

Jo Ashline

And, uh, and I’ve listed all the categories. Just… and that’s fine with us. I think CureSyngap1  will use you anywhere you decide to go.

Beata Tarasiuk

So, thank you. That’s so kind. So… I started thinking, what can I do? How can I contribute? What can I do? And I was thinking, I’m so overwhelmed. I’m grieving so hard. I had a hard time telling my parents because I couldn’t hurt them the way I was hurting.

Jo Ashline

Right.

Beata Tarasiuk

And, um, that was very hard for me and I didn’t tell them for a month. Kasia was their only granddaughter, their only grandchild.

Jo Ashline

Yeah.

Beata Tarasiuk

And she was going to be the only grandchild. There was no… perspective for another child. Now we know she has a sister. And, and, um… so I came out to the community. Because I thought, okay, this community, this CureSyngap1 community, just surrounded me with so much support and so much love. And I felt that this was… really helpful for me to—to get strong again and stand again. Maybe, I thought, maybe I can find somebody for my parents. Somebody, some other family that has a Syngapian in their family and then maybe they could be… supportive for my parents. 

Jo Ashline

That’s so cool. 

Beata Tarasiuk

This is so good. 

Jo Ashline

You’re even a better person than I thought. 

Beata Tarasiuk

I’m trying not to cry. I’m trying not to cry. So I came out to the group, to the international group, and I said, “Hey, is there anybody in Poland? Is there anybody who would be willing to talk to my parents?” And they don’t speak English. So I thought, you know, in Poland, that would be… that would be an avenue. Like, maybe there’s some people in Poland or maybe there’s a community in Poland, like here, and they can talk, they can—they can tell you—know, support them in this, you know, overwhelming decision. Because I was preparing myself to—to tell my parents about this devastating diagnosis. So… nobody came, except you. There was nobody from Poland that said… there was nobody in Pol—there was nobody from Poland, and you… you, Asia… you had parents who spoke Polish. Because they’re Polish, living in California, and you came, and you said you can talk to my parents, they can call my parents, and they can talk to my mom and dad.

Jo Ashline

Okay, we’re probably crying together now. Earlier it was too early. Now it’s okay.

Beata Tarasiuk

And I will never forget that. That you came. You came and said, “Here’s the offer.” They will talk to them. They will support them. I have a son. He’s older. And my parents will do that for them. And they speak Polish. Don’t worry. I don’t know if you remember this because people usually don’t remember little things. Because for you… it was a little thing, probably. But for me, it was just absolutely…

Jo Ashline

But for me, it was like, “Holy moly,” there’s another Polish family. And like, we’re, you know—I was like, my brain—I was firing off on all cylinders. I was like, there’s—there’s another one. It was so early on. And so I was like, we just hit the jackpot. Not only is there a new SYNGAP family that I’m going to connect with, they’re also Polish, you know. Um, so I do, I do remember that now, yes. Thank you for sharing that with me.

Beata Tarasiuk

Absolutely. Well, and that brings me to… because that was the one part of the story.

Jo Ashline

Yeah.

Beata Tarasiuk

And uh—and that was—our parents ended up never talking. You know, my parents took it very, very hard and maybe in the future—I mean, your dad unfortunately passed away and—and that’s—that’s a lot of grief. But your mom is still alive and maybe one day they will talk, our moms. So maybe you’ll visit Poland and maybe you’ll take your mom.

Jo Ashline

Maybe I’ll send my mom to your mom for like…

Beata Tarasiuk

Yes, you’re welcome. Welcome. Come. She will be thrilled.

Jo Ashline

I’m not trying to hurt anyone, I swear.

Beata Tarasiuk

She will be thrilled. So um—and—and we have a place to host you. So yes, come, come. We always say, you know, in Poland, “Guest in home, God in home.” So yeah, so.

Jo Ashline

You’re Polish I have no doubt that you have a place to host anything. Trust me, we find a way, right?

Beata Tarasiuk

So then I had some time to think about it, you know, and then at some point my… said something that really got me thinking. Because he said something at the time, you know, pharma companies, they do pay attention to diseases that have… thousands or more patients in developed countries. And then he, you know, I—I started like reading about and hearing about more about treatments, more about the possibility of treatment, and at the time it was very, very even difficult to believe it, right? But he said, you know, “If we get a thousand or more, you know, the pharma companies will get interested.”

Jo Ashline

“They’ll start to take notice.”

Beata Tarasiuk

So I thought, wait. Poland is a developed country. There’s nobody in Poland. I called. I asked. Jo answered, nobody else answered. There’s nobody in Poland. And then I thought, “It’s impossible.” It’s absolutely impossible that—I mean, it’s 40 million people country. There are SYNGAP patients in Poland. They’re just not—we don’t know them. We don’t know who they are. So that’s how it started. You had a part of it.

Jo Ashline

Oh my—that’s so special. I love that. But, you know, we never know, right? We never know how we can—we can impact our community. Thanks for sharing that with me. That’s so—that’s special. I love that it helped fuel you a little bit. You know, I—I invite myself anywhere. I—even if I’m not invited, I’m like, “I’m here.” I’m showing up. That’s just how I am. This time it worked in everyone’s favor. 

Thank you so much for tuning in to part one of my two-part episode with the amazing Beata. Part two will be out soon. So make sure you check our socials and come back so you can finish our amazing conversation. I hope you found our conversation insightful, informative, and a source of support and connection. Make sure you never miss an episode by subscribing wherever you listen to your favorite podcasts. For more information about today’s guest, visit our show notes. To learn more about SYNGAP1-related disorders and our incredible community at CureSyngap1, visit us at www.curesyngap1.org. For questions, comments, and suggestions, please email us at ed@curesyngap1.org. I’m so glad you spent time with us today. Even if it was in five-minute increments while drinking coffee you’ve microwaved and forgotten three times. What matters is we showed up for one another and I can’t wait to do it again next time.