Rhandyl: Hey, y'all. So today we have on a special guest with us, Effie Parks. I have followed her on social media for a while. You're one of the original podcast hosts that I know of that founded and advocating for the disabled community. And so you're kind of like the predecessor for this world of disability and rare disease. And last year we had an episode with Katie Taylor from Child Life On Call and your name was brought up in that episode. And then recently we talked to Ryan Sheedy with My Mejo and you were also brought up there. And so I know you're involved with a lot of things and we are really excited to hear all about you and your family and your career. And so welcome Effie. 

Effie: Hello, ladies, thank you so much for the invitation. Thank you for creating another podcast and giving more voices to our community. And yeah, shout out to Katie and Ryan. Love those guys.

Rhandyl: So first off, I guess just give us a brief rundown of you and your family, your career.

Effie: Sure. Yeah. I live in Seattle, Washington. I have a husband and two little kiddos my seven, almost eight year old son named Ford has a rare neurodevelopmental disorder called CTNNB1 you said job. I laugh. I have a hundred jobs right now, but is it the career I had before Ford? No. I think like most parents, I was forced into figuring out a new way to make money or not make money at all because having a proper job outside of the home and a kid with. Medical complexities is very complicated. 

Rhandyl: Yeah. You said Ford, he's almost 8. My daughter's also almost 8. I'm curious when is his birthday? 

Effie: June 30th.

Rhandyl: Oh, so he really is close. 

Deonna: Yeah. Sunday. It's this week. Yay. Yeah. Happy Birthday, Ford. That's so exciting.

Effie: Yay. Thank you. 

Deonna: What kind of birthday party are y'all doing? 

Effie: It's so funny because I feel like the first several years I was like, we're not having a party for Ford. Why? It's just too much work and it's hard and he doesn't have any friends and, blah, blah, blah. Oh my goodness. And. As the years have gone on and especially thanks to my husband, who is like an eternal bright, shiny optimist, even more so than myself always makes sure that we do it and that we do it exactly how we think he would love it. And I'm thankful to him for that. But I did ask for this week what he wanted to do. Yes, it's last minute, I know. 

And I gave him an option between going bowling or going to this splash pad park that he likes and he chose bowling. So we're meeting some friends and a teacher or two from his school, just some family, and we're going to go bowling so he can wheel around and be a wild man and knock things down with a ball, which he enjoys so much. But yeah, I'm getting more joyful around his birthdays than I think I used to be. Yeah. 

Deonna: They're hard. I get that. I, birthdays are hard for disabled kids. It's just, there's a lot of emotion. So is he in a wheelchair all the time? You said wheeling around, yeah.

Effie: Yeah. He's a full time wheelchair user.

Deonna: Yeah. I can relate to that for sure. So tell us about the initial finding out about his diagnosis. 

Effie: Huh. It's complicated in that sense. We did find out later after accessing our medical records that they did know that Ford had inter utero growth restriction. Things should have been done at that point, but the ball was dropped with our midwives. Wow. But yeah, that's a whole other episode. But yeah, when Ford was born, he was really small, super low birth weight and he wasn't sucking or swallowing. So immediately there was the red flags.

We were definitely gaslit and brushed off in the hospital for several days before being sent home with a kid who still wasn't eating. And then obviously it just got progressively worse from there at home trying to feed our child, wondering why he was so uncomfortable, why he couldn't sleep, why he couldn't have a bowel movement.

And then after about four months of continuously going back and begging for help that our child wouldn't eat. He was finally admitted to our Seattle Children's Hospital. And they were like, there is actually a problem here. Yes, this is not your fault. You are awesome, amazing parents who have tried everything.

Rhandyl: Oh, man. And you're like, yeah, that's what I've been trying to tell you guys for four months. Oh my gosh. 

Deonna: You said midwives, so were you trying to have him at home and then you ended up having to go to the hospital or? 

Effie: Nope, so our insurance that we had at that time was Kaiser and what Kaiser does, at least where I am at, is they try to make every pregnant woman go see midwives instead of OBs and because it's more affordable.

So I just did what I was told. I was so happy. I felt so great as a pregnant woman. I was like, okay, whatever as long as I can still deliver in the hospital and get an epidural if I want one. Oh, and I'll see a midwife. So I didn't think anything of it because I wasn't like a super stressed out, worried, pregnant woman at the time. Yeah. So I was just like, okay, whatever. Which I later found out was an absolute huge mistake for my situation. Sure. 

Deonna: Oh man. Okay. Wow. So you didn't find out, you knew something was wrong and it's hard because when you, that's your oldest kid, you don't really have anything to compare it to. Even when you have a first kid that everything's fine, it's still hard. So that's tough when you were telling people over and over, you didn't feel like something was right and you just aren't getting listened to. That's

Rhandyl: I mean, newborns in general, whether they're typical or not, I can only imagine the stress and the frustration that you had during that time.

So once they finally were like, okay, there's something wrong. I'm sure you went through all the genetic testing and all of the things. So how old was he when he was officially diagnosed with CTNNB1? 

Effie: Yeah. So after that initial hospitalization, we finally got hooked up with all of the appointments, right? And then put him through the rigmarole. And one of them was genetics. And the geneticist was like, oh my gosh, I totally know what Ford has. Yeah. definitely has this one form of albinism. The one form she thought it was actually the fatal form. So they ran a whole exome sequencing. Thank goodness that they didn't waste their time on any other types of panels.

And then it took a long time because Kaiser actually forgot to send in our sample. Eventually when that got done, we got a diagnosis for him at 16 months old. It was not this fatal form of Albinism. But it was something else called CTNNB1. 

Deonna: Oh my goodness.

Rhandyl: Explain to us how this affects him.

Effie: Sure. CTNNB1 is a gene. And it produces a protein called beta catenin. And this protein is extremely important. It has to do with all of our cell growth the way our cells communicate with each other the development of various tissues throughout the entire body. It helps the cells stick together and everything that is essential for normal development and functioning.

Oh, man. So when there's a change in the CTNNB1 gene, the protein just doesn't make enough. So we're like a loss of function, right? So the body isn't producing enough of this protein and therefore it causes a range of problems, a big spectrum in the body, but particularly affecting the brain and the development of how it makes everything function.

So things like most neurodevelopmental disorders our kids have mobility issues, feeding issues, GI issues, sleep issues, intellectual disability. They have different eye disorders and most of them are nonverbal. Some of them have seizures. So all of us have the same typical sorts of symptoms. They just vary in different ways here and there. 

Rhandyl: And is there any treatments or procedures or anything that could potentially or that he's had done over the last almost eight years to help him? 

Effie: Unfortunately, like almost every rare disease, there are no treatments, no real treatments available, which is why families start foundation and fund research and make that stuff happen, which CTNNB1 doing.

But for now, everything is about managing symptoms, right? So Ford takes various medications. He takes one for seizures. He takes a few different medications that are actually typically prescribed to Parkinson's patients for his dystonia. So yeah, all you're doing is managing symptoms and putting band aids on things. Yeah. And then, giving them therapy to try to help their body move and their cardiovascular system work. But no, there is no soft landing when you get a genetic diagnosis for sure. 

Deonna: That's what I was going to ask you. Can you tell us just what you and your husband felt like when they tell you this? It's your first kid. How did that feel? 

Effie: It is, I don't even know how to explain it because it's such a blur. It was such a blur at the time, and it's remained a blur. Everything definitely feels like it. blew up into outer space and also everything was pulled out from under you. It's a horrifying, terrifying moment in time that nobody has anything to answer for, right? It's scary. You live in complete fear. There's complete uncertainty. You don't know if your kid's going to live or die. You don't know what's going to be taken away from them. You don't know how you're going to manage as a family. Like everything is swirling around and you're in this storm. And it is a very confusing and traumatizing time for a family. 

Deonna: And you don't just magically get over it either, which I'm, I'm on the other side of the trauma for sure. And it doesn't just go away. And I remember when all of our stuff happened, it did feel like that. It was very out of control feeling.

And when you said it's like a blur, I do think God sometimes is okay, I'm going to erase some of this from your memory because you can't actually remember this stuff. It's too much. Cause there's about a six to eight week period where we talk about it sometimes and I'm like. Oh yeah, I don't even remember because it's just too, it's too bad to remember I think sometimes.

Effie: Yeah, and honestly that is a gift that our brain gives us. There's obviously an issue if it's like polar that side, right? Where you're completely blocking things out and acting as if it didn't happen or exist. Yeah. Your brain is taking care of you when it's letting certain things like that go because it's helping you learn how to cope. It's helping you make space for things that are more important. Honestly, that sort of absolute forgetting is a gift. 

Rhandyl: Yeah. It's a blessing in disguise for sure. 

Deonna: And then you go watch a video of that time, like I used to do these update videos, and then you re watch it and you're like, Oh my gosh, like, why did I re watch that? I had already forgot about that. 

Rhandyl: To bring back some really, yeah, tough memories, you're like, Oh wait, that's why I forgot about that. Yeah. Totally. 

I know you said luckily for his gene sequence is not a fatal but what type of prognosis, if any, have they given you guys for Ford for the rest of his life and your caregiving journey? 

Effie: I used to be pretty, sad and pretty mad that they didn't know the answer to that. And the answer that I got made me even more mad because how could they have given me that answer without any information themselves? 

So like when I was given the diagnosis, these are the exact words, and I use this word because that's the word they used, and I feel strongly that this word makes the encounter even worse.

So when we got his diagnosis, they said, Ford is never going to walk. He's never going to talk. He has a shortened lifespan. And he's going to be severely mentally retarded. Oh my gosh. That's exactly how they said it to me. And I just, and I say that word because every time I say it, it makes me sick, but I say it because that's what. Families are still being told when I know that it's a medical terminology still for a lot of medical professionals, but in the diagnosis room, stuff like that has to change, right? Oh, sure. Cause it's already harsh. I didn't realize. 

Deonna: I didn't realize that medical professionals were still saying that like we grew up in the 90s where that was this like Term that people said and it like I feel like people were so desensitized to it And now everybody's no, you can't say that obviously But yeah for medical people to still be saying that I just I did not know That was a thing, still.

Effie: It's true, it happens. It's still being taught in school that way, which I get, right? I get it in the medical sort of sense I understand why, but when it has become a term of offense on purpose, then things have to shift, right? Yes. It has to. Yeah. 

Deonna: And there's so many other ways that you can say, your child is going to struggle mentally. Like it's going to be a struggle. Intellectually. Like we, we get the picture. 

Effie: Simple. IDD. That's all you gotta say. Yeah. Yeah. But they never should have said any of that is the thing. They only should have said, we don't know. We don't know. Yeah. It's too early. There's no research on it. Here are some resources. Yeah. Families shouldn't be told those things because for so many years, all I thought was, my kid's gonna die, my kid's gonna die, what does short lifespan mean? Yeah. It's just not necessary because you don't know. You don't even know of a kid that did die, so how would you know this?

It's just it's extra layers of extreme trauma and things that you're laying on a family at a time when you should be supportive. Honest, for sure, but honesty is also not knowing. 

Rhandyl: Yeah. We've been told so many things about more like hopefulness more than your situation. Like we were told. When they didn't know these things that oh, you know by this age She's just gonna be your typical kid, and then that didn't happen and then they would say oh in a couple of years she's gonna be running around with her peers and and then by like age four I'm like, okay, you can stop telling me this just and we don't know We will never know, we're just gonna take it day by day, and yeah I've completely stopped even worrying about prognosis and future things, cause, if you live in that world, you're just gonna go crazy no, that's 

Deonna: The word “never” is really hard to hear, though. Like I had that exact same experience and I think they were trying to tell me, Hey, let the dream die. I feel a little bit don't live in a false hope situation. But it was really hard to, they were like, she will never move again from her shoulders down. And I'm like, are you sure? And they were like, yes, like never, which they were also like, she will never breathe again on her own. But you just never know. Like you said it's really up in the air. Only God knows what's going to happen to our kids. 

Effie: Yeah, and I feel like this is why it's so important for us as parents to tell our stories, especially these diagnosis stories the information that was delivered to us and how it was delivered to us because we have to change that very first piece. I really believe that initial shock has the power to completely stunt a caregiver and slash completely propel them right and depending on what kind of person you are and what kind of coping skills you have and what kind of family support you have you can really screw someone's future up by completely ruining it right there.

You can make them wait years longer before they decide to advocate in some way or do something because they were so broken from that moment, and that's where we really need to empower families and give them that sort of support and hope. 

Deonna: Yeah, I do think doctors need to learn how to deliver information in a more sensitive way because they, you know, I don't know. I'm not always super positive about doctors, but doctors don't know what that's doing to us that day. They might have some idea, but it's like soul crushing to us, and they just go home and don't think about it, I, there needs to be training. 

Rhandyl: And then you have some caregivers that just 100 percent believe what they're told, and then that can be detrimental for their child, because they lose hope. And trying to manage their symptoms and help them live a good life, and a somewhat normal routine and try to be out there with the other children and just all the things. Like I know so many families that have been told these things and then their children are secluded because they honestly lose hope, because of something that one physician told them years ago, and it's definitely something that has to change.

Effie: Yeah. One hundred percent. Which is another reason telling your story is so important and why podcasts like these are so valuable, right? For people to find their community, to hear these conversations, to dip into it without even having to give anything back but getting that other perspective and then maybe being lifted up a little bit and feeling like, okay maybe I can do something, maybe I can think differently maybe this isn't it. 

Deonna: Yeah, it is hard though because I feel like people are just trained to believe every single thing a doctor tells you and that's how I was for the very first part of this. Like we had a doctor tell us at one point, if your daughter gets COVID, she will die. There is no, like they were just like, there is no, ifs ands or butts about it, it will happen. Then when we get home, cause ours all happened during the height of COVID and everything. I was terrified for over a year. I wouldn't let anyone near her. I just was so afraid.

And then, guess what? She got COVID and she was okay. And I couldn't believe it. It was just this like one comment from one person telling me she would die. And I believed doctors so much back then when this first happened. And now when doctors tell me stuff, I'm oh, okay. I trust them in a way, but not like I did back then. And 

Rhandyl: Oh yeah. We were told this was pre COVID, yeah, exactly. We came, we brought our daughter home pre COVID like 2017 and they had scared. And I think they try to do that to, I don't know if it's like to scare you into how important it is to keep your child safe from germs and stuff. But yeah they were like, if she get the common cold she could die. And so I was the same way we were just completely traumatized and isolated in our home. And yeah, the things that providers tell caregivers and families, I don't think that they understand the trajectory that can have on families for years and that the mental challenges that just their words have on us. So 

Effie: yeah, and it's a really good day when you figure out that you can fire your doctors Not everybody knows everything like that's a really good day when you figure it out because that's one other notch in your belt of being an advocate And that's a great day 

Deonna: It really is. And I feel like it's, we all have that moment where we feel like we go a little crazy and you were trusting so well and then all of a sudden one doctor does one dumb thing and you're just like, oh no, like I'm done with you. I've had a couple moments like that, unfortunately, 

Effie: and it's not just the doctors, right? It's our therapists. It's all of them. 

Deonna: Everybody. It's everybody. So how do you guys, you and your husband handle just the daily stress? Is there anything you guys do that you think is beneficial to our listeners to handle the stress or even how your family members outside of your home handled it? Cause I know it, it ripples out and affects others too. 

Effie: Yeah, first of all my husband knows he's not allowed to be stressed because we both can't be stressed at the same time. So that's the first thing that we do. Oh man. And then there's two other things, which if anyone listens to my podcast, they know I don't shut up about these other two things and I will die on any hill for them.

But I have this. Big magnetic chalkboard sticker on my fridge and my sister told me to put, to draw four oxygen tanks on it and put something in each oxygen tank that I couldn't live without every single day. And I started doing that when Ford was like two. What's in there is water, eating something healthy, going outside, and breathing.

And I noticed that the second I put that on my fridge, and I made sure to tick off each and every one of those every single day, the amount of relief and the amount of just conquering and how much I got to give myself so much credit and I knew the things that I were doing were so good for me.

And then they just became absolute parts of my cellular level soul that I just don't even notice them anymore because it's what I do. And I know they make me better. And I know that if everything is on fire, those four things are going to keep me above water. At least a little bit. 

Yeah. And then the other thing is I really believe in walking for your mental health, for your brain, for your body, for your alone time to get out of the scene.Don't go and hide in your closet. Don't go and hide in your bedroom. Don't go in your car unless you're going to move your car. Like you have to leave. You have to leave your house. And you have to find the time to do that or walk around or, yes, put your treadmill out on your porch. Sometimes I do that.

But I think there's just such an interesting connection that I have proven in my own life of walking and thinking about my life at the same time. I believe it's so healing. I know it's good for my body. I know it's good for my family's life, for me to make those things happen. Yeah. And. And. I think when my husband and I just know the things that we need for our souls, we completely encourage each other to do those, because we need each other to be as healthy as possible. Mentally, physically, emotionally those aren't big things. And any caregiver that says that it's absolutely impossible, I promise you I can help you find a way to make it work. 

Rhandyl: Yeah, it's not impossible. You can make it work. You can do those things for yourself. For sure. 

Effie: You can do those things. You can eat a piece of lettuce, that counts. You can do it. 

Rhandyl: On your double cheeseburger, just, yeah. 

Effie: Exactly. Yeah and sometimes I feel like that makes you happy, that counts. There's good calories in food that makes you happy. But, Yeah. Tho those are my simple things. I love it. I follow my oxygen tanks and I refuse to not get a walk-in.

Rhandyl: That's great advice. That is good advice. Yeah. So I love that. 

What were, and I guess are, and continue to be, the hardest parts of raising Ford?

Effie: I think that depends on the day. Some days I'll be like, I hate the stupid wheelchair, the stupid minivan, I can't go places, and I have to carry all this crap. Sometimes it's that. Sometimes it's that I don't have anyone to help me because grandma's busy and we're stuck in our house because I can't take Ford and my other daughter to the park by myself because he has to go do his own thing.

Big things are his sister, right? Managing her being and making sure we don't screw her up with all of this and making sure she feels loved and seen and just not left behind. That's a really hard thing. The thinking about the future, right? Trying not to live in that too much because that's scary.

We're going to have him for the rest of our lives. We're going to be taking care of him forever. The financial aspect of all of that. So it just depends on like where you're at and it is important to notice if something is really keeping you up at night too, right? And to figure out how to smooth that a little bit.

But yeah it's a lot of things. It's summer right now. So right now I'm going to say it is so hard to have a kid who can run around and a kid who can't and feel stuck at the house because you don't have a caregiver. 

Rhandyl: So now how old is your daughter? 

Effie: She's five. Yeah. Okay. Five years old. 

Rhandyl: Okay.

So my daughter, Remi she's Ford's age. And then I have a two year old almost three and I can totally relate to the sibling issue that you have. It's the sibling thing is like it's very hard.

Effie: And also beautiful at the same time. I know it is, Yeah, so who knows what it is. It just depends on the day

Rhandyl: I know that's an open ended question that I feel like we all know as caregivers the hard parts. But to new caregivers that are just now dealing and starting this process, I think it's a good thing to hear that this is normal and we're going on eight years of doing this life and that it's hard, we find ways to cope with it, and it becomes our new normal. But that it's still going to be hard. 

Deonna: Yeah, you can't figure it all out, but there's always some new fun thing to figure out. I feel like for us anyways. 

Effie: And there's so many good people here, right? Make your friends, find the things that make you feel good. Go do something good for someone else. I promise that matters. If you can be an advocate in any way, I promise it matters. Not just for the greater good, but for you personally, figure out how to be a giver in some way, because that always comes back to you and I just, I can't express enough to like, really. Just encourage a caregiver to do something for someone else. Yeah. That's good advice. And I know that's asking a lot because you're doing literally everything, but I promise you it matters. Yeah. And for me 

Deonna: And when a caregiver, when a caregiver does something for somebody, like when I do something for somebody, it's a really big deal for them because even though they don't understand my life, they know whoa, this girl has a lot going on. It's really hard every day. And then she made us food. So she must really love me too. You know what I'm saying? It's a big deal to them cause they're like, Oh my gosh, she, took time out of her crazy life to do this for me. This is huge. It means a lot. I've had a lot of people tell me that they're like, I can't believe you did this for me. Considering like what your life is like and I'm thinking, yeah, I barely got it done. 

Effie: Yeah. And that's another thing, right? It’s a good way to not be in your bubble completely, because we can live in our bubbles and still not get any, all of the stuff done we need to get done because it is such a grind. And there's just a constant barrage of things. But doing something outside of that is just really a breath of fresh air in so many ways. And it gets you unstuck. Yes, 

Deonna: And out of your pity party. 

Rhandyl: Yeah, I can totally relate to that. Just with my career. I do pediatric physical therapy and I am in people's homes with kids with severe disabilities on a daily basis, and so it humbles me and I also love to help especially new families advocate. It's my out, and it helps humble me and realize that I'm not stuck in this, like I'm all alone in this. And so I get to be around families a lot in our similar situations. And so that's really great advice to just help and.. 

Deonna: Get outside of yourself. Yeah. And it's good too, cause it makes you realize, like with my older son, who's not disabled. One time he said, we have the hardest life of anyone I know. And I was like, we really don't though, even though it's really hard, a lot of the time, there's so many other people out there who have problems that you don't know about. They're not as slap you over the head visible as your kid being in a wheelchair or something like that. But a lot of people are going through stuff. Like you doing things for others makes you realize you're not the only one that's having a hard time. It's a pretty common thing that we're all going through.

Effie: Yep. And it's so soul giving. And it can really change your mindset and your perspective, exactly like that. And I think that's really important to always try to, as best you can, be on a forward path. Because you're gonna be falling into these holes all the way throughout, but you have to keep getting out.

Deonna: Yep. Yeah. No, that's a good, that's good advice. 

What are some positive, unexpected, or just like some of your favorite surprising moments that you've had through raising Ford and just being a part of this community? 

Effie: Everything, every single day I feel so blessed that I got to somehow figure out how to make Once Upon a Gene and meet these amazing human beings all over the world who are the best parents, the best siblings, the best doctors, the best researchers, the best employees at companies who care.

I have met people who wake up every day who are actually the people who are changing the world. And I didn't even know they existed. Yeah. And to know that it's literally Just so like it's the blood, sweat and tears from just moms and dads and all of these people I just mentioned that are going to be making history and that are going to be making medicines and who are going to be making therapies and who are going to be evolving the conversation for kids like ours.

 It is a total, it blows my mind every day that. I didn't know this was here. I didn't know that I could love my child as much as I do. I think I would have been a really cool, great mom, but I shudder to think of what I might have cared about that I don't care about because of Ford. 

Deonna: Yes. That was my before and after and it's not cute. And there were things I look back on and I joke, like, why was I stressed about that? Why did I even care at all? And just the cluelessness of the disability world or any minority group. It was just like, I don't care because I'm not a part of this group. And it was, yeah, it's upsetting. That's what I've been through. And. I don't even know the old me. It's not good. 

Effie: Yeah. I think we have a really special position to know what matters most and a more efficient and quicker way to just get to it. 

Deonna: Yeah, that's so true.

Rhandyl: So what or who has helped you the most, and what has helped Ford the most? 

Effie: I mean, my husband for being the most perfect person on the planet, but especially his mother, who's slightly more perfect than him. I would die without both of them. She's the reason that I have been able to even remotely try to care about myself. That's cool. By all the help that she's given me. But then, yeah, every single person who has been touched, who has boomeranged back to me through this podcast has been transformational.

And it has fueled me to be a helper and to show up for my family in the ways that I do. So there's magic in this medium, right? There's magic in telling your stories and finding your people and making this about community and lifting each other up. I couldn't do it without every single person that has ever stepped foot into my ecosystem since having Ford. 

Rhandyl: There is power in the village, for sure. 

Deonna: Okay, what would you tell a parent who is just getting a diagnosis similar to Ford's?

Effie: I would tell them to take things one day at a time and to find your people who understand your journey. And that it's okay to feel overwhelmed. It's normal to be scared. Know you are not alone, period.

You are not alone. There are so many communities and resources out there to help you navigate this. And to not get stuck, to absolutely let the feelings flow through you, be mad and be sad and feel why me, and then do something about it. And don't think that you have to be bigger or better of any type of advocate than anyone else because what matters is that you're doing something and you can't do that alone.

So reach out, find these podcasts, find these people on social media. Unfortunately, most of your friends will be on the internet, but in the end that'll actually be a blessing because you don't have time to go anywhere anyways. So really just find them because I promise they will help heal the parts of you that are completely just road rashed. 

And you will get stronger and you will get better at this, and you will only do that with finding others who align with you and who support you and who encourage you. Do not get stuck in the dark hole with people who are just gonna nod along with your trauma and never make you leave it. You are gonna be traumatized. That is a fact. But your trauma can also give you a lot of growth. so get there And don't get stuck. 

Deonna: That's, that's like a whole TED talk right there. 

Effie: It's true, right? I remember the beginning of that. You've seen that happen with families and I feel like they're so encouraged sometimes to really just put that flag in the ground that their life is harder and worse and everything is awful and you deserve to recognize that at all times. Like you can't stay there. You can't. 

Deonna: I like your video you posted last night where it was like, it's horrible, but it's great, but it's also horrible, but it's also great. And it is true. And it's something that I got real hung up on at the beginning. Part of what you just said is where I felt like I had to find moms whose kids were paralyzed because that was what I was going through.

And so I was looking for that exact thing. And I'm sure there's thousands and thousands of them in the U. S., but then I started to realize other people, like all three of us have a lot in common. Our kids all have completely different things going on, but we all understand each other's life. Like not maybe every little medical part of it, but the feelings are there. 

Like I was bonding with this mom the other day whose son almost died of cancer. That has nothing to do with my kid, but it was the feelings were the same no matter what. So I think you can't get hung up on how I have to find someone with the exact, CTNNB1, like that's probably going to be a little unlikely, but there's so many, so many parents out there who have the same feelings, even if the diagnosis or.

Effie: 100%. Yeah. We're all living the same life and it's normal that you're going to be comparing here and there. No shame in comparing, but don't make that your identity either. No. 

Rhandyl: So we initially talked about your podcast, Once Upon a Gene. So what inspired you to start this podcast in 2019? Obviously your son Ford. 

Effie: In complete desperation to find people like me. Podcasts weren't as available as they are now. There really was almost zero on the topic. I tell people that I found something that was extremely religious that I couldn't identify with. And then there was It's super science stuff that I was really trying to grasp and understand when I was learning about genetics.

And then there were these two guys named Sean and Kyle, who are adults living with Friedrich's ataxia. And they were just laughing. They were talking about riding bikes across America. They both use wheelchairs. They have this terrible disease and they were fun and successful and happy and advocating and I was like, this could be my son.

Yeah, they just changed everything for me and I binged their podcast and then it was over and I was like shoot. I am going to do that because that just brought all the light that I needed in. It inspired me, it invigorated me, and I can't find my people anywhere. I'm trying to find them in these groups of symptoms like you mentioned, and I'm trying to find these podcasts, but they don't exist. So I just made one. I was like, I think this is what I'm supposed to do. I don't know how else to find people. Even Instagram wasn't like it is now. There were not families sharing their story and sharing their journey. And I literally couldn't even find one video on the internet of someone showing me how to use a feeding pump, this, parents just weren't doing this. Yeah. 

And I just was completely compelled. I knew I had to do it and I literally did it within like weeks because I just knew. And COVID really brought in thousands more podcasts, not necessarily our genre, but lots. But yeah, I just, I did it because of, because they inspired me to. And they helped me and I wanted to be that for someone else because I couldn't not contribute after what they did for me. 

Deonna: That's really cool. Have you ever talked to them before? 

Effie: Oh yeah, I emailed them during that time and said I'm Effie you guys are my friends. I don't know if you know that yet, but we're totally friends now, and yes we've had, You know, many conversations and many sort of collaborations. Ford's got to hang out with one of them before. Oh, I love that. 

They're still podcasting. In fact, they just arrived. I don't know where they are exactly, but they're biking on like the highest road or whatever, somewhere in the Himalayas. Nice. Yeah. They're amazing dudes. Go follow their podcast. It's called the Two Disabled Dudes Podcast, and they're my heroes. 

Deonna: I'll have to go check that out. Yes. 

What are some of the best things that you have experienced from having the podcast? And then just tell us a little bit about what your future plans are for it. 

Effie: I always have so many ideas and no time or money. I haven't had a bad day from the birth of this podcast because of it, ever. I have the most beautiful friends. I've got the opportunity to travel all over the world because of this show. I get to go meet families. I feel like all these kids are my kids, I feel all your kids are my kids, I just feel so connected to these families I get to help people start their foundations, I get to help connect them to people who are going to help them with certain parts of research, I get to help people start podcasts, I get to do lots of things like that. And I get to hear people's ideas when they're noodling things around about what they maybe want to do. Sometimes I'm like, me, why are you asking me? And it's all because we're telling our story, right? And we're trying to make this place better than we found it. And I think that there's so much power in the intention of why something exists that eventually makes it flourish.

Deonna: Yeah, for sure. Yeah. 

Effie: But mine is a hundred percent people. And just seeing the good in what everyone is doing is really cool. 

Deonna: I love that. And what are your future plans for it? 

Effie: Who knows? I would love to take Once Upon a Gene on the road and do some live recordings. I would love to translate it into different languages so it can be accessible to families who don't speak English. And I would love to have someone give me money for it to make videos and stuff, you know, to just grow in that aspect. 

Deonna: Just throw it out there. You never know. 

Effie: I love those things. I don't know where it is going to take me next. I'm really just here existing in it. And I think that things come in my path when they're supposed to. So yeah, we shall see but… 

Deonna: That's exciting. It sounds like you've got to do so many cool things. It makes me excited for even just the future of ours. What could happen? Cause you just don't know and it’s… 

Effie: You never know who's listening. 

Deonna: If you keep going, that's all that matters, but that's right. 

Rhandyl: Okay Effie, it's been so great talking with you today. Before we go, are there any resources or advice that you'd like to give our listeners?

Effie:  Yeah, you can find me anywhere, Once Upon a Gene, my name's Effie Park, because I'm all over, you can't miss me. Shout out to literally everyone, I love you. But I will say, just in regards to new families listening get your podcast that you need in your ear when you're driving or sitting in the waiting room because you need these friendships. They're passive and you don't have to give anything back to these people. You can just take and take and take all you need. It's important. 

And then I would say some really valuable, just initial resources. Yeah, Katie Taylor, like I said, from Child Life on Call, Ryan Sheedy from My Mejo. It's literally all of the crap that you have to manage with your kids care right there on your phone. And it's pretty and easy. You need it. Stop dealing with all the paperwork and being completely discombobulated. 

And then I would also say the Courageous Parents Network, who is just an elite resource for families who are raising medically complex kids, go check out their website, get involved, message them. They are such a huge source of support for families like ours. And get involved somehow. 

Deonna: That's really good advice. I typed that Courageous Parents down. I hadn't heard of that before, so I'll have to go look at that. 

Effie: They're the best.

Deonna: Thank you so much for talking to us. I know you're obviously very busy, just like us. You got a lot going on, especially in the summer. And so we're so thankful that we actually got to talk to you in real life. We've been following you for a bit, but we just are so thankful you took time out to talk to us today.

Effie: Yeah, thank you. It was my pleasure. I am so grateful that you created this podcast. 

Rhandyl: Thanks, Effie. Hopefully we can talk again soon.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.