Ashley’s Guest – SRF Community Activation Leader Corey Baysden
Show Notes:
In Episode 3, Ashley talks with SYNGAP1 Mom Corey Baysden. Corey talks about the joys of raising Saylor as well dealing with a difficult diagnosis and finding a community in SRF. As SRF Community Activation Leader, Corey communicates with and advocates for many newly diagnosed families. You can reach her at corey@syngapresearchfund.org.
Saylor’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/saylor
Follow Corey Baysden:
What is SYNGAP1: https://www.syngapresearchfund.org/home/what-is-syngap1
Syngap Research Fund: https://www.syngapresearchfund.org/
Donate: https://Syngap.Fund/Donate
SYNGAP1 & Epilepsy
Why Getting a Genetic Diagnosis Matters
How to Get Free Genetic Testing
Special Needs Trusts
Connect with SRF (@curesyngap1):
Follow Ashley Frye:
- Nathan’s Warrior Story: https://www.syngapresearchfund.org/syngap-warrior/nathan
Wednesday SRF Family Zoom Meeting:
Syngap.Fund/SRFfam Meeting ID – 972 0059 2178 Passcode – 848417
Comments: ed@syngapresearchfund.org
Music: In the Forest… by Lesfm from Pixabay
Episode 003 SynGAP Stories, March 7, 2023
#Syngap #SYNGAP1 #epilepsy #autism #raredisease
Below is a transcript from the audio:
Ashley Frye
Hello and welcome to SynGAP Stories, hosted by me, Ashley Frye. Every couple of weeks, I try to spread information and awareness about a rare disease that affects my son, Nathan. It’s called SynGAP1. I chat with parents, siblings, caregivers, and others about the challenges and successes of their journey with someone impacted by SynGAP1. I hope you enjoyed today’s conversation.
Ashley Frye
Hello and welcome to SynGAP Stories. This is your host Ashley Frye and today I am chatting with someone who I already consider a friend, Miss Corey Baysden. You may know Corey because she has a daughter named Saylor who’s four years old. They also have an 11-year-old daughter, Carolina. And Corey’s husband is Ryan. They live in Newport, North Carolina. So that’s near the Outer Banks, right?
Corey Baysden
Yeah, so we’re kind of considered, I guess, the southern Outer Banks. We’re at the bottom of the little islands.
Ashley Frye
Yeah, yeah. All right. So, Corey, you and I have gotten to know each other through SRF and being volunteers. But what I would love to do is just start from the beginning. Tell us about Saylor. What’s she like?
Corey Baysden
So Saylor is, man, she’s super special. She loves life like nobody else I’ve ever seen. She lights up a room. She’s great with eye contact, which is awesome. She just has a purity about her that’s unique and special. And she’s just fantastic. Little spitball. Ball of fire.
Ashley Frye
Aren’t they all? All of our SynGAPians seem like they know how to cause some trouble.
Corey Baysden
Yeah.
Ashley Frye
How did you… What was your first indication that something was going on with Saylor that wasn’t quite normal?
Corey Baysden
Um, we kind of knew something from, from really the early beginnings. She had a lot of ear infections. Um, She seemed to have trouble feeding. And we had to go and use the bottle. Because she wouldn’t attach properly. Quickly found out she had milk allergies. And she… I can’t remember the protein it is in milk, but there’s some protein in milk that she seemed to be allergic to. So we had to buy a special formula. And even then, it was still… really hard. With her feeding, um she had really ear infections, it felt like every weekend, poor thing, she was just constantly stopped up. I dreaded winter time because we knew man— Here it comes. Um, she didn’t, she didn’t have normal, um, development or at least not on time development. Everything seemed to be, you know, a few months behind or several months behind. Um, so we, we knew right away there was some things. Um. She also… wouldn’t babble. And she was like the most insanely happy baby. It was crazy. I remember my husband and I, we went to the doctor on like our first visit. Well, number one, she didn’t cry when she was born. And my husband was waiting for that smack on the hiney and her to start crying. And she just sat there and was like, ‘It was perfect.’ She was so quiet. It was like one of those quiet births. No one made a sound in there. And we went to her first doctor’s appointment. My husband was like, ‘Hey, is it normal for babies to just not cry? Never? She’s just always happy.’ And they were like, ‘Well, not normally, but that just means she’s a good baby. So don’t worry about it.’ So we didn’t really worry about it. She was just happy. Now, she had some sleeping issues, but that wasn’t abnormal at the time. So we weren’t too concerned.
Ashley Frye
So something you said reminds me a lot of Nathan too. I remember many times just like putting him in the little swing in the corner of the room. And he was just, content for as long as you and would just watch everybody do whatever anyone was doing and was just completely happy observing and just rocking. And wouldn’t say a peep.
Corey Baysden
Yeah, I carried her. I carried her for like ever because. She was just happy being close to me and I could. plop her in my little carrier and… Plop her anywhere we went and she was just happy as could be. Never even cried in car rides or anything. It was fantastic.
Ashley Frye
Oh my gosh. That’s lucky.
Corey Baysden
Yeah. My first one was not that way.
Ashley Frye
Mine either. Tell me about how you ultimately got her SynGAP diagnosis.
Corey Baysden
So, um… We knew early on that she seemed to have some autistic traits. She flapped her hands. Didn’t babble normally. She did a lot of grunting. And seemed very fixated on… certain TV shows and certain things. Um… So we obviously had an early intervention and thankfully. They were great. They started speech therapy and OT and PT and all that jazz. Pretty quickly on. Um, we had tubes put in her ears. We thought that was going to help with the ear infection. They helped for a minute and then the tubes fell out. And sure enough, the ear infection started again. And so we ended up having her adenoids as well as her tubes put back in. And the doctor was like, man, those are the worst adenoids I’ve ever seen in a kid.
Ashley Frye
Really?
Corey Baysden
Yeah. They were just full of infection. So he was pretty certain. He was like, man, once you get these out, we get her head all cleared up. You know, we’ll be able to, she’ll gain some cognition skills and some speech skills because she’s probably not able to hear. What you’re saying. And if you can’t, hear what you’re saying. You can’t develop speech. And he said, and there’s so much congestion all in her ears. It’s probably throwing off her balance. So that may be why she’s delayed. Yeah. We thought that was going to cure her. And, um… It did help. We notice she paid attention to our words more and looked at us more. And could actually hear us when we called her name. But it still didn’t. You know. Have that big great awakening that we were waiting for. A few months passed by and we started noticing eye rolls or eye flutters. They were so fast. It was just a few seconds. And we thought, hmm. Well, that’s new tick. You know, that’s just some kind of autistic tick and didn’t think anything of it. We seem to see them more in the bathtub than we did. During any other time, but they were really sporadic. Thought nothing of it.
Ashley Frye
Right.
Corey Baysden
She went to school. And I started going to pre-K and happened to have a substitute teacher that day. And the substitute teacher, and she fell all the time. All the time. I mean, the girl, poor thing, she couldn’t walk around the house without holding my hand because she would just collapse on the floor. And again, we thought her balance was off. It’s just part of the global delay. You know, we know she has some hypotonia issues. No big deal. Until the… teacher at school came and said, ‘Hey, I was holding her hand today. Her knees went weak, and her eyes rolled at the same time. She’s got epilepsy. And I know because my daughter has the same thing. And I went, ‘Oh, my gosh. Oh, my goodness. I didn’t even think about that. I mean, we’ve been looking at this for I don’t even know how many months. We saw it. And I feel terrible, but I had always seen movies where epilepsy in movies looks, you know, like a tonic-clonic. You see them on the floor shaking. You don’t know that there’s anything other than that looking… seizure. So fortunately, I was able to get it.
Ashley Frye
Right. There are different types of epilepsy.
Corey Baysden
Yeah. Tons of different ones. I had no idea that those even existed. I was able to get it on video and I took it immediately to our appointment when we got the neurology appointment. And it didn’t take too long to get that. And when she saw the video, she was like, ‘Yeah.I can pretty much bet you that’s epilepsy.’ So she ordered the 24-hour ambulatory EEG. We had that at home. That went pretty smoothly.
Ashley Frye
That’s nice to have it at home.
Corey Baysden
Yeah, yeah, it was really nice. And Saylor didn’t mess with her leads or anything. She bounced around the house like normal. Um… We had an MRI that came back normal. They ran some blood tests and did some genetics testing. That came back normal. So we were like, ‘Okay, it’s just the seizures.’ Well, she was having 180 seizures a day. And so… Her poor little brain was just constantly having thunderstorms.
Ashley Frye
Oh my gosh. Poor girl. Right. Yeah. And think about like all of the time and effort it takes just to get back to what you were doing before your brain messed it all up.
Corey Baysden
Yeah. And fortunately, she. She didn’t seem to, she didn’t really stop what she was doing. That’s one of the reasons we didn’t think it was a seizure because she would be eating something and she wouldn’t even miss a step. It was a blink and then she was right back at it, or she’d hit the ground and then she’d get right back up and start playing with her toy again.
Ashley Frye
Oh my goodness. So at the point you realize that she’s having, she has an epilepsy and it’s going to be a thing you’re dealing with. How was that period in between knowing that she has seizures and getting a SynGAP diagnosis? What was that like?
Corey Baysden
Well, we knew, we knew. Something was wrong. So it It was never shocking. We weren’t really anticipating anything. We just knew we had to deal with another set of problems, you know. So it was really kind of just focused on stopping those seizures. Thank you. I did kind of go on a little rabbit hole hunt down the Google land on what could possibly be causing seizures. Aluminum on the brain. You need a drink? No. Fiji water and oh my gosh I feel like I tried every single thing I spent most of my evenings just searching for some kind of cure or therapy or something that would you know help out but I had no idea.
Ashley Frye
So when your original genetic test came back and there was nothing… Nothing hit. What was the next step?
Corey Baysden
They ran more. And we kind of thought it was crazy. We were like. Well, we know it’s not genetic. You know, she didn’t get it from me and she didn’t get it from my husband. So it’s not hereditary. What are you going to do about it? You know, it’s genes are genes. You can’t change them. And so what’s the point in even knowing? What’s going on? Until we got it. We went to our next neuro appointment. It was in July. And went through the whole thing. And then she’s like, ‘Oh, yeah, by the way. I got your genetic report back.’ And we’re like, ‘Yeah, that’s kind of a big deal.’ Would have loved to know that from the beginning. And she reads it off, and it’s a bunch of gibberish that nobody understands, and apparently not even her. And she said she’s just got a form of mental retardation, and it didn’t come from you, and it didn’t come from your dad or her dad.
Ashley Frye
That’s all she said?
Corey Baysden
That’s literally all she said. And I said, ‘Well, that’s it.’ I mean… And she said, ‘Yeah, there’s nothing you can really do.’ And she said it’s not in any literature. Um, so. I immediately was like, ‘Well, can I get a copy of that genetic report?’ And she looked at me like I had two heads and was like, ‘Oh, sure. If you want it, you can have it.’ And I was like, ‘Yeah. I want it. Give it to me.’ So that ended our, ended our, our appointment. And the receptionist printed off my stuff and… I went home for the evening. And as soon as I got the kids to bed, I started Googling every single term on that page. I didn’t even know where to begin because none of it made any sense. Heterozygous, de novo. Pathogenic, likely pathogenic. I was. All greek. Yeah. And I happened to type in SynGAP1 because that was one of the… the little gene things and the… The box. And sure enough. A flood of information. And I was like, man, we’ve got. A reason. I didn’t know what it meant, but I spent. The next 24 hours, like. finding everything I could. I went to Facebook. typed it in there, and sure enough, SynGAP Research Fund. And. The whole community. And then I was like, ‘Oh, there’s others like me.’
Ashley Frye
Oh my gosh. Okay. Let’s, let’s put this into perspective first too. Like that was not too long ago. So we are in March 2020. Excuse me. Goodness. We’re at March 2022. When was she diagnosed?
Corey Baysden
July of 2021.
Ashley Frye
So… You had a hard time. In 2021. trying to get answers. Can you imagine? What it would have been like years sooner.
Corey Baysden
Oh, yeah.
Ashley Frye
Like that’s the part. Thank you. Of all of this that I just can’t wrap my head around. Like, I feel pretty lucky that we got a diagnosis as early as we did. But then I think like, there are still these barriers that probably should not be in place. Like that, physician saying, ‘Well, there’s nothing you can do about it.’
Corey Baysden
Well, as frustrating as that was, I was at least thankful that she ordered the genetic reports because there are so many kids out there that their doctors don’t ever order them. And I’m like, what in the world? You know, I’m in these groups now and I see these parents that. All the symptoms sound like SynGAP. And I’m like, have you had your kid genetic tested? And I’m like, I feel like a psychopath because I’m like— Big brother. Yeah. I’m hunting down these people. I’m like, go get it tested. Go get it tested. And you have to do multiple tests because not just one will find it.
Ashley Frye
Oh my gosh. Right. Right.
Corey Baysden
There’s this second one. That, or maybe the third, I’m not sure. It was one of the two. Um, That ended up popping for us. The first one came back. As nothing. And apparently the insurance company wouldn’t even pay for the second one unless she had the first one. And so there is a process there. Now, if you’re listening, there are companies like Invitae, which I didn’t know about, that does that behind the seizure program and offer some free testing. And so there are ways to get it done without costing a crazy amount of money.
Ashley Frye
Yeah. And that’s part of what SynGAP Research Fund tries to do is share all of the information that any one of us finds with the entire community. It’s hard enough to find each other. Once we’re here, we share it all. So that’s definitely a very good point too. Okay, let’s pivot a little bit and… Tell me about, all right, so you’ve been involved with SRF for a little while now, and you’ve been pretty. pretty busy as a volunteer. When you have a new family, talk to them and you’re one of the first. people who they’ve encountered who also has a child with SynGAP. What do you tell them? What’s the first thing you tell them?
Corey Baysden
Don’t panic. Don’t panic. It’s not going to solve anything by… tucking tail and going to hide in a corner. You got to put your big girl pants on. Or big boy pants on. And, and take this battle and, and embrace it, you know. It sounds crazy to do it. But we’ve been kind of chosen to be these kids’ parents. And you can, you can sulk and be miserable. Where you can take it for what it is and love your kid and fight for your kid. Because… I feel like God gave me Saylor. Because he knew I would fight for her. And I had always been asking. It’s crazy because I really was praying about being able to find a purpose to help people. Cause I’ve always kind of felt like I, I had something greater in life than… just selling advertising. And he gave me my purpose. Now, it definitely wasn’t what I thought I was praying for, but it’s… it’s, it’s turned out to be a blessing in disguise.
Ashley Frye
Yeah. Yeah. Well, you are definitely a very, very good advocate for SynGAP1 patients and a volunteer. I mean, you are one of the strongest and fast-moving women I’ve encountered in SRF. So I’m very, very, very lucky to even be chatting with you. I, let me, um, What is one of the things that you are most interested in learning? From parents whose children are older than Saylor.
Corey Baysden
Hmm. Well, I tell you, one thing I’m probably the least educated in is setting up trusts for the future.
Ashley Frye
Oh, yeah.
Corey Baysden
Cause that is, that’s. Yeah. It’s a morbid thing to even think about, but that’s our, my largest fear. And I think that’s probably most parents’ largest fear is what’s going to happen when we’re not around because our kids, they have to. Have someone take care of them 24 hours a day, seven days a week. And nobody’s going to take care of them like we are. I mean… You have to know their language. You have to know what they like and their habits. And they’re very habit-driven. And so that scares me to death because. I just, I can’t even, it consumes me. I go to bed thinking about it every night.
Ashley Frye
Yeah. I think that’s definitely one of the scariest things, simply because I’m not sure that we have a population of volunteers and parents yet who have successfully blazed that trail and have, have the wherewithal to share it with us yet. You know, I mean, it’s, that is such a hard concept all around to wrap your brain around.
Corey Baysden
It is.
Ashley Frye
You know, and I also. I also think about Okay, so… We’re probably going to be moving on to the next life before our kids anyway, you know, you know. You think about your neurotypical kids. And that’s hard, even planning for that, you know. And then you add on this dynamic of, you know, this person cannot physically take care of themselves in a safe manner. And then… you’re gone.
Corey Baysden
So yeah, which that’s, that’s why I volunteer. Cause I. I want to help to find a cure. or at least something to… Get her to the point where she can take care of herself.
Ashley Frye
Yeah, yeah. You mentioned that our kids are very habit-driven. What do you think? What do you think is the most difficult part about that?
Corey Baysden
Oh, well, it varies so widely amongst every single family. I mean, we’ve got from one extreme to the other with our kids. You know, there are some kids that absolutely cannot handle anything outside of their exact pattern of doing things throughout the day, whether it’s their food they’re eating, the time of day they have their food, or whatever it may be. And then… There’s some kids that are, you know, more flexible. Fortunately, Saylor’s pretty flexible. I mean, she knows what time she’s supposed to have something done. But she doesn’t, it doesn’t break her throughout the day. So we don’t have. Except for ice cream. She really could eat ice cream 12 times a day. And that’s been kind of a struggle because after school she comes home and she’s like, ‘Pointing to the, she grabs my hand and takes me to the freezer and she’s like, ‘Open the ice cream, mom.’ And I’m like, no, not right now. Not right now. And then, 20 minutes later. Mom. Ice cream. I need ice cream.
Ashley Frye
Yep. Yeah.
Corey Baysden
But, um, that is difficult, though, especially if you don’t have, you have very, um, dynamic schedules and you’re trying to accommodate them.
Ashley Frye
Yeah.
Corey Baysden
Sleep patterns. Oh my gosh. Don’t mess up. their sleep pattern.
Ashley Frye
Yes. Everyone says don’t wake a sleeping baby. Well, you got like five other different layers on there with SynGAP kids in their sleep. I mean, it’s just. Once you get it good enough, you don’t touch it.
Corey Baysden
Yeah, don’t let them happen at the wrong time.
Ashley Frye
Do everything exactly the same. Nope, nope. I mean, do you need this stubby? You need this light on. You need the fan on. We’re going to talk about something. And then, you know, like the pattern. Oh, the pattern. And it’s so, I mean, it’s, it works. Thank goodness. But. Man. It has to be there.
Corey Baysden
Random three o’clock wake up and then they don’t go back to sleep till three o’clock the afternoon of the next day when you’re trying to keep them awake because you’re like, ‘No, you got to sleep tonight. You’re not going to bed. You’re staying up all day long. I have to. You do too. Yeah.
Ashley Frye
Ugh! So tell me, as hard as it can be on a daily basis, caring for our kids, how do you take advantage of your time in a way that… is enjoyable for you? How do you give yourself a break from the, the tedious nature of being a mom to a SynGAPian?
Corey Baysden
I’m not a good person to ask that. Because I do not give a… anytime. at all. I do work out in the yard occasionally. If I can squeeze it, but usually I’m working in the yard. I’m mowing the grass with her because I can’t, I’m not allowed to mow the grass without her because it would break her heart. She is a thing. Daggone loves the lawnmower. A mother grass sometimes just because she wants to get on the lawnmower. Yes, but you know, I’m usually out there and she’s running around. I’m trying to figure it out. Now I can put the Alexa Dot on the front porch. and play her favorite music. While I’m trimming bushes or throwing out pine straw and that kind of entertains her.
Ashley Frye
It’s like her anchor.
Corey Baysden
Yeah. She will stay towards that music unless a bird’s flying and then she runs down the road. Throwing down the hedge clippers going, no, God. But, um… Yeah, I’m a terrible person because I don’t, I’m now volunteering. I work a full-time job. My other daughter does dance and other extracurricular activities. So we kind of don’t stop and then cooking and cleaning and everything else. But I’m really good at telling other people to do that. To stop. I’m like, no, you need to take a break. Decompress. You’re no good if you don’t let yourself rest.
Ashley Frye
Well, okay, so do you have therapists who come in and help, or do you have respite? Where you live?
Corey Baysden
Yeah, so… We go to, or she goes to preschool. From 8 to 12 every day. And that’s just for this year. I think next year she’ll go till three o’clock. And then after she gets home from school, the therapist comes at12:30, 12:45. And she stays till about 4:45, 5 o’clock. So she gets about 25 hours a week of ABA therapy a week.
Ashley Frye
That’s great.
Corey Baysden
Fantastic. Absolutely fantastic. She, and I was kind of worried about ABA because. If you’re in any of the mom groups, you get… a drastic different point of view from each person you talk to. Some people are pro-ABA, some people are anti-ABA, it’s all over the board. Fortunately, we are pro-ABA. Saylor loves her therapist. Like she loves us. I mean. As soon as she sees that car pull up in the driveway. She’s literally screaming at the top of her lungs at the window. Can’t wait for her to pull up. And then, as soon as she knocks on the door, she’s at the door screaming for her, jumping up and down. grabs her hand and then pulls her either backyard to go swing or pulls her upstairs to start working. She’s been doing the swinging more here lately since it’s spring and it’s nice outside. Yes. And so they play out there for 20-30 minutes and swing as fast as she can swing. And then she comes inside and they go upstairs and they work and do their color matching and their letter matching and their block stacking. Whatever they’re working on at the moment. And then. And the funny thing is ABA is like in a reward system. So some kids are more food-oriented. She happens to be song-oriented. So it’s hilarious because she’ll have to do her little task, you know, matching the colors or whatever. And her reward is the therapist will sing. Whatever song she wants.
Ashley Frye
That’s amazing. Oh, my gosh. That’s awesome.
Corey Baysden
She does a little chorus of the song. And then she’s like, ‘Okay, you got to work again.’ And so Saylor will work for a little bit. Ten minutes later, I’ll hear her singing A, B, C, D.
Ashley Frye
That’s great. That is amazing that they figured that out about, about Saylor and that it’s, it’s enticing enough for her. Like for me, that would not, that would not cut it.
Corey Baysden
No, but with her, I always joke. I’m like, ‘Who’s working who now?’ I think you’re getting ABA’d more than she is. They’ll take a break, go outside and swing for a little while and then ready to work again. They do a great job with keeping her attention. And, and making it fun for, I mean. She doesn’t get excited about me. I’m boring old mom. But daggone therapist comes over and it’s party time. Now anybody that pulls up in the driveway, she assumes they’re there to entertain her. And she grabs their hand to take them where she’s wanting to take them.
Ashley Frye
That’s so funny. Oh, I love it. I love it. What are you most proud of Saylor for in the last year or so?
Corey Baysden
Man, everything. She has come a long way. And I really will have to say it’s probably due to all the ABA. It’s just kind of taken her out of her shell. She started babbling. Now, she still hasn’t. She’s nonverbal, so she doesn’t say ‘mom’ or ‘dada’. But she is saying those words, just not with purpose to us, you know, not saying like, ‘hey, mama’. But she’s babbling all the time. She’s using different words. And I swear she’s like saying words, but I can’t ever get her to repeat them. I mean, there was a broccoli, a cocomelon broccoli song on a day before yesterday. And it was something broccoli. And all of a sudden I heard her say broccoli. I was on the phone with my mom and my mom was like, ‘did she just say broccoli?’ I was like, ‘she said broccoli.’
Ashley Frye
That is awesome.
Corey Baysden
So she’s definitely coming along.
Ashley Frye
Yeah, she’s learning those sounds and how to say them. That’s great.
Corey Baysden
And here, the past two weeks. She’s learned to start throwing things in the trash and she kind of miraculously did it on her own. It was every morning she comes downstairs from her bedroom. And, um, gets all her clothes and sits on the couch and strips her down and gets her ready for school. And obviously has to take off the diaper because she’s not potty trained yet. And I throw that on the floor and wrap it all up. Put her clothes on. Well, she grabbed my hand. This was about… Two weeks ago, grab my hand. And shoved my hand down to the floor towards the diaper. And I’m like, ‘What are you doing?’ And so she wanted me to pick it up. And so I pick it up. Uh-huh. And I’m waiting for her next instruction. And she grabs my arm again. And she drags me to the kitchen. To the trash can. And like nudges for me to throw it in the trash can. So I open the drawer and I throw it in there and she’s like, ‘Yeah, good job, mom.’ Again, who’s ABA, and who? Well, now she knows because the next day I was like, ‘Oh, no, this is your job. You’re going to do this. You know what to do now.’ So there’s no excuses. So I pointed to it and I was like, ‘You pick it up.’ And sure enough. Now she picks it up and she takes it in there. She can’t quite pull the drawer open for the trash can, but… I pull it open for her. She throws it right in there. And other things around the house now that she knows is trash. She’s like, ‘Okay, that’s my job now. I’m the trash girl.’
Ashley Frye
Just wait until she starts throwing non-trash items away. Yeah. I… hand and not tell it, like, I have found a portable speaker in the trash.
Corey Baysden
Oh yeah.
Ashley Frye
Plates, forks. I mean, you kind of expect that. Um, Oh, gosh, this was a heartbreaking moment. Nathan had taken one of Liam’s lovies. Liam is about a year and a half older. But he had this one hippo lovey that he was just so connected to Hippo disappeared. He made a very tragic exit. And we are pretty sure it’s because Nathan just tossed hippo in the trash. No one knew. And that was that. I mean, like. I clean my house. Hippo is gone. That thing is not in the house. It is gone. You just wait. Tell me the first item she throws out.
Corey Baysden
Tell me where my Roku remote is because we have lost that.
Ashley Frye
There you go. I looked everywhere. It’s the trash. Yeah. Oh, awesome. So I believe Saylor and Nathan are about the same age. When does she turn five? September.
Corey Baysden
September.
Ashley Frye
Nathan’s June. Yeah, they’re pretty close. So one of the things that I’m really excited about now, that everybody is starting to get comfortable and travel a little bit more. Now that the pandemic has, um, slowed down. I am excited for meeting everybody, for meeting people like you. And meeting people like Sydney in Pennsylvania. So, I very much appreciate your willingness to spend time with me today. We had for. No one will know this, but Corey and I, and now you all will because we’re going to share, but we had. The most embarrassing time trying to get synced and like hearing each other with our microphones and our headphones today. So I very much appreciate your time. Oh, my goodness. We had all the testing. I mean, we’re going to look back and laugh a lot about this. Um, But I’m very excited to really spend time with people like you who are so passionate about our kids and for finding a cure. Corey. Thank you so very much for spending this time with me.
Corey Baysden
Thank you for having me.
Ashley Frye
Yes, absolutely. And in the meantime, everybody. I am excited to see you all and hear from you. And chat in our next episode. Be well.
Ashley Frye
If you enjoyed this episode, don’t forget to subscribe and like us wherever you’re listening. For more information about today’s guest and SynGAP1, please check out our show notes. Your suggestions are welcome. Please email us at ed@syngapresearchfund.org.