The Brett Boyer Foundation with Ellen Boyer

Today, we’re honored to speak with Ellen Boyer, Co-Founder and President of the The Brett Boyer Foundation. Through this conversation, Ellen shares the beautiful and deeply moving story of her daughter, Brett.

Born with both a congenital heart defect and Down syndrome, Brett brought immense joy and light to everyone around her. Even through profound loss, Ellen, her husband, and their community have transformed their grief into something truly meaningful—creating a foundation that supports CHD, Down syndrome, mental health, research, and provides financial assistance to families in need.

We also highlight two incredible parts of their mission: the Warriors program, which celebrates Heart Warriors and creates a space to embrace and honor their stories and scars, and Brett’s Barn—founded by Brett’s aunt, Caroline Bryan, and fully funded by Caroline and Luke Bryan. Ellen shares how Brett’s Barn came to life and the impact it continues to have today.

Brett’s story is nothing short of extraordinary—offering hope to families navigating grief and strength to those still in the fight. Join us as we celebrate Brett’s life and legacy with her mother, Ellen.

https://www.thebrettboyerfoundation.org/

https://www.instagram.com/brightforbrett/

https://www.facebook.com/brightforbrett/

If you or someone you know would like to be part of the podcast you can message both Meagan and Amy at:  candidhearts25@gmail,com

Find our journey’s on Facebook:

My HLHS Diary- Amy Erhart Cunningham

My HLHS Story- Meagan Houpt

Transcript

Brett Boyer Foundation- Ellen Boyer

Welcome to Candid Hearts conversation in CHD, where real stories meet real hearts and nothing is off limits. We are your hosts, Amy Erhart and Megan, Houpt, and every other week we'll dive into the moments that broke us, the ones that built us, and the people who remind us that even on the hardest days, hope still beats strong.

In this space, we have honest conversations about life with congenital heart disease, the challenges, the triumphs, and everything in between. These are raw, heartfelt talks, all centered around the heart because behind every diagnosis is a life, and every life deserves to be heard. This is candid hearts. These are our conversations in CHD.

Ellen: This is such a treat you guys. Thanks so much for asking me here.

Meagan: Are you kidding? I'm so excited.

Ellen: Me too. Me too.

Meagan: We wanna know how the Brett Boyer Foundation got started and why you started it.

Ellen: Okay. Our Brett we tried for a really long time to get pregnant seven years and after seven rounds of IUI.

She was our first round of IVF and I wasn't lucky enough to know anybody with Down Syndrome. So when we received her Down syndrome diagnosis and CHD, it was back and forth. At first they were like, she has, a possibility of having Down Syndrome, but we're not sure. And then when we found out about her AV canal, it solidified that to us, but we really weren't a hundred percent about her having Down syndrome until she was born.

But I wasn't lucky enough to know and love anybody with Down Syndrome. So I was terrified of what that meant and really feared the wrong diagnosis. Because her particular heart defect she had AV Canal and they gave us a 97%, potential success rate via surgery. And it never, ever crossed my mind that we would be in the 3%.

And then the minute she was born, of course those fears shifted and I realized that her having Down Syndrome was. The best thing in the whole world. And I would never in a million years have changed a hair on her head. And that CHD was gonna be a beast. And I really ignorantly thought it was, you feel like you're the only parent in the world that's ever heard those words.

And I thought it would be a small, corner of the hospital with a couple of beds. And we walked into that peds ICU with all 40 beds spilling over surgeries getting rescheduled because there's no room to in the end. And I'm like, wait a minute. How common is this? Why is nobody talking about it?

Why didn't I understand? And we were lucky enough to have Brett at home for four months. Her open heart surgery was right at four months. And we spent the rest of her life there. That first, surgery didn't go as planned and we were lucky enough to have her hang on for a hundred days .

All of those lived experiences and different needs that we saw in the hospital immediately even before we lost her, we were like, we've got to use our voice about this and spread awareness everywhere we can. Just like every other mom that I and patient that I see in different forums, the awareness means everything to you immediately.

She had open heart surgery for her atrial ventricular septal defect. . And so that first surgery was supposed to last around four to five hours. They called us, before four, and said she rocked. It did great. But when they warmed her up and did the echo her mitral valve didn't tolerate her being septated and so had to go back in.

And that surgery turned into 12 hours. She came out on ECMO and was on ECMO for seven days.

Meagan: Oh, wow. I came, she went four months though. That's amazing.

Ellen: Yeah she was, we had her for seven, almost eight months. She made it almost eight months. , They told us she's the sickest kid in Nashville tonight after that first surgery.

I don't think she'll make it through the night, but she did. And then I don't think she'll come off ecmo, but she did. And then we were able to extubate her a couple of times and then ended up pretty clear that if we didn't do, something else to her mitral valve to try to tweak it a little, that she, would not be able to tolerate being extubated.

And her second open heart surgery went a lot better. But the invasiveness of it all was really what we just couldn't recover from. And we ended up losing her really to a blood infection.

Meagan: Gotcha. I'm so sorry.

Ellen: Thank you.

Amy: Yeah. And I just have to say, I think it's, so when you're looking at one thing and then it's possible that something else ultimately takes your child from you, it's not necessarily, it is the heart defect, but there's so much more that is on top of that.

And it just makes it out to be so many more unknowns

Ellen: for sure. It was the not being able to get nutrition, it was how many wires were going in and out of her at constant times, and I really do believe the further we get into this and the more neurodevelopmental research projects come out, that's all so deeply important in.

Life expectancy certainly is for quality of life and for, all of those neurodevelopmental progress. But I really think it makes a difference in how much we can take and survive is how much, we can stay connected to the people that are right there looking for ways to continue to love us.

Meagan: . , it's a hard story, but to where you are now is amazing.

Ellen: Thank you.

Meagan: I know that was the start of the foundation, but , how did it

Ellen: So we ended up really developing a great relationship with our surgeon and it was maybe a month after Brett passed away, we ended up having dinner with him and his wife, and Caroline and Luke and me and my husband Bo.

And we sat around the table and I was just like, I'm usually, or I used to be a type B please don't ruffle feathers with anybody. And Brett really changed that, to where my backbone is slowly fused a little with every passing year, and, but also just being in those positions will just change.

Nobody walks in the hospital and leaves the same. But I was outta my mind in grief that was , like I said, one month out and we were talking about just some really hard, heavy stuff at dinner. And I was like, what do you think you needed to save her life? And he said I needed a mitral valve replacement, but they didn't make 'em small enough for her and even the options that were there were not a fit for her. And me having that limited understanding, I was like, I don't understand why they don't just make 'em smaller.

Meagan: Yeah.

Ellen: And he was like to be frank with you kids, can't vote and they don't pay taxes and there's no return on investment for a device that's made for kids.

And we all just sat there are you kidding me? And to be honest, when I look back of what I know about myself, I'm really uncomfortable with anger. I don't like to be angry at anybody. And this was the healthiest place for me to be pissed. And it was the healthiest place to pour all this love.

I didn't know what to do with. And I'm so grateful that my husband and my sister-in-law, who's an angel and Luke who's a dang good guy too all were like. I think they recognized if we don't find something good to do with this, it's gonna kill Ellen too. And Bo too. All of us, we lived through, three and a half months of watching, not just our, Brett pass away, but so many kids go through so many things and we were like, you tell us what to do to fix this, and I'm about to make it my life's mission.

And we really did. And we started out because Brett was treated at Vanderbilt, how do we support families? Where do I , use my lived experience to meet this need? Just feeding families, showing up and doing different things at the Ronald McDonald House showing up in, hey, what about that family that nobody was ever at the bedside?

And they're like the mom's a single parent working her tail off to pay their rent. I was like, what if we cover her rent? And those kinds of things just started to make me come back alive out of that dark hole. And then there were several great research projects that Vandy had going right then, and I was determined to support what they had going.

And so that was really what started everything. And then we decided after some traction with things, we gotta legitimize this a little bit. And so , now we've funded research projects all over the country. We've got a medical advisory board that really helps us, dig our heels in and get to the grit.

Is this gonna make it to the bedside in five years? Can we really, how do we help them get to some NIH funding to really make a difference on this? And now we have 11 partner hospitals where we try to go in and fill the gaps, is Bill pay most helpful here? Or is it keeping a closet where parents can get toiletries at any hour of the night where they can get blankets for their baby?

And one project that we have done at every one of our partner hospitals that I pray becomes obsolete. But we have Code Queen Bee and that is a bereavement closet. Because that was such a traumatic experience for us to have to go and buy those items. Because nothing that I had fit her after that whether you have the resources to go shop.

It's still such a traumatic experience that we were like, if we could keep these on hand and still let the parents have the control of going to pick out exactly what they want, that they feel like fits their kids' personality without having to leave the hospital and go and shop with a room full of parents that.

Living through the most exciting time of their life shopping for baby clothes it was just what we felt like was the first act of kindness in the deepest pain that we all too well understand. So Code Queen Bee is one that we have really tried to push to make with as many partner hospitals as possible.

Meagan: That's amazing.

Ellen: Thank you.

Meagan: As adults I don't really hear that side of it.

Ellen: Yeah.

Meagan: Yes. I follow people and then something happens and then they tell us when they post it then you see it. But I don't see it all the time. Like a parent sees it.

Ellen: And sometimes, that's gotta be, I don't know that I shared any of this when, social media was different nine years ago.

Meagan: Yeah.

Ellen: I was giving updates to, every now and then when I felt like I could string a sentence together. But the most unwelcome feeling is pity. Even though that's a very natural feeling when somebody's lost their loved one, it still was unwelcome to me. And but it was something that I felt like, the day that Brett passed away that had to give her so many fluids that I had tons of clothes in the room, but none of them fit her.

And I remember them offering, I'm sorry, I know this is hard to talk about, but to wrap her in a blanket and I was like. Oh, that's not happening. She's wearing clothes out of here. And my sister-in-law were like, we're going to get it right now. But I'm like, what about when people don't have that person that I have here?

What about COVID? When they did have 'em, but they couldn't get near them. What, what happens? Because even though it was an unnatural guilt that I felt because I did have clothes there, I still felt like that was my job to do for her and I couldn't do it. And then what if you've lost your job through all this and you can't afford to go buy?

We just really wanted to eliminate that possibility for a mom or a dad to ever carry that around. And so that's why we were like, we're gonna have some options on hand for people.

Amy: I do think that's a huge piece. If you've never been through that, you really don't know what is actually needed and what you needed the most.

And you had support. But like you said, what if I didn't? And I, it just brings an entirely new perspective to the fact that when you're grieving it's hard and you need X, Y, Z. And to be able to be that for somebody and to find that, in your love and your grief and through it all,

Ellen: for sure.

And that's what we've really tried to sit around. It's not just my perspective, it's her mom. Bo's perspective as her dad. It's all was a different experience for each of us. Caroline's is her aunt coming in and not knowing like she's wanting to be there for me and her brother, but she's still watching her niece in these unnatural, environment.

Luke, it was a whole different experience. 'cause of course everybody thought he was there to visit the hospital for fun. And it just, how do we anticipate based on what we saw? And maybe it wasn't a particular need for me, but I still witness so many parents that I bonded with need it.

But that is one thing. And the other thing is. That I've tried to figure out how do we meet all the needs, not just people that don't have particular resources. I don't care if you have, eight figures in your account. I don't care if you have 50 family members at your beck and call. There is no way that you come in here equipped.

And there's nobody that can understand it other than people that have lived it. So the mental health portion of it, and we had several friends that really sat Bo and I down and were like I'm really praying over your marriage. I hope y'all are taking care of each other. And, from one person I would take it and be like, I really appreciate that.

Let me go say something nice to Bo today. Even if I have to make it up right now. But then there were some that would say it to you and it's, everybody I think can relate to this, but some people would say it to you and you'd be like, oh, great. Another thing you want me to add on my plate? Now I need to go.

Okay, great. Appreciate your help.

Meagan: Yeah.

Ellen: But one thing we wanted to say was, Hey, this is something we didn't do and we wish we had, and we want you to have that opportunity. We know therapy is expensive. We've really tried to invest. We have at Vanderbilt and Duke, where we've really invested in mental, we have an inpatient psychologist at Vanderbilt.

But we've partnered with Ollie Hinkle Heart Foundation to fund their mission in Tennessee and Georgia. Because I think that they're doing it so well. There's no pointing us trying to recreate what they're already doing. We need to join arms with everybody and figure out how do we stretch all of our dollars the most that we can and our voice that maybe they don't hear it from me, but they hear it from Jen.

And trying to encourage parents as early as you can, start taking care of yourself. The whole, you can't pour from an empty cup thing is sometimes cliche and frustrating, but it's so true.

Meagan: Honestly, I love that you said why create our own thing when we can just join forces.

Literally Amy and I have talked about this so often.

Ellen: Yeah.

Meagan: I created a list of all organizations and people that offer different things all on one website so everyone can just go there and find it, but everyone is doing the same thing.

Ellen: Yeah.

Meagan: We're all donating to different things.

So I'm like, why? Why can't we just all work together?

Ellen: For sure. And I can, I certainly of all, I really do understand wanting something in honor of your own child and feeling like, but I don't want to have to ask somebody else how to do it. I've never ever wanted to feel like I was discouraging somebody from starting their own because i, I want everybody to be successful. It's gonna take all of us.

Meagan: Yeah.

Ellen: It's gonna take us working together. And one group, it is too big. It is too big of a problem. . For one person or one huge group. I don't care how many dollars they have. Either they have the dollars, but they lack the understanding or they have the willpower, but they don't have the voice.

There's all the things that it's like, what do we bring to the table and do together? Yeah.

But when I have had parents that I feel like they, if they're don't have the luxury of doing it full time, which also I have to admit, is not easy either. 'cause you can't just step away.

Meagan: Oh, I'm sure.

Ellen: I'm thankful that I get to talk about Brett every day, but , some days I don't want CHD to be everything that I talk about , and so a lot of times I will encourage, if there's a group that is doing something you really like, you can have your child's fundraiser within their organization and then you do it and then you live your life and heal or do what you need to do. And it certainly doesn't have to be with us.

I love so many different aspects of what other groups are doing, obviously particular to Ollie's branch, but I just worry so much about people getting burned out because. I've been through those phases for sure.

Meagan: Oh yeah. Even Amy and I were talking about this , I think last week of do we keep going?

Amy: I think too,

Meagan: we talk about it all the time.

Amy: Yeah. And to your point, you're living it every day. Like you said, you talk about every day. Yeah. And while Yes, you love that, it's really hard when it, that is your identity sometimes. Yeah. Like you do just need that break. I actually just talked about it with my cardiologist today.

I was like, you wanna raise awareness, you wanna be an advocate, but you don't wanna have to be so in it every day that's all you think about.

Ellen: And you need people with new energy too, to come in because you get too. Events that don't sell or you get two, initiatives that didn't take off, or two posts that you were so excited about that didn't go.

It's hard not to be like, I'm killing myself for this. But it's not for nothing. It means everything. And I, and so many people are so grateful to see y'all living your life, but of all people, I want you to have the ability to be like, need a three month break and I'll be back

Meagan: and

Ellen: and I'll be back better, but don't ask me what's wrong.

'cause I don't know.

But it is, I appreciate your momentum and when you feel like you need a break and you need a cheerleader,

Amy: yeah.

Ellen: Call me and I'll be happy to. Shake the pompoms because we all need it.

Even when you're making great progress, even that sometimes can be overwhelming. Like, where do we go from here?

Amy: Yeah, . I think how you said when you know you post something or it doesn't go as well as you anticipated .

Ellen: Yeah.

Amy: I always think to myself, if it reaches one person, I may not hear what it does to that one person, but I know it has to at least impact one person.

It can't be all for nothing.

Ellen: Yeah. Yeah. This is a vulnerable thing to talk about because it's something that I think I, the problem I created, but I am so proud of what all we've done with bill pay and family support. When we first started it, like I said, we were doing it with Carolina Luke's money.

It wasn't donor money, so it was easy to, and especially because that was really important to them. I don't want anybody to know it was us like that. If you, if we're doing that for that reason, we're in it for the wrong reason. So the shift from, now these are donor dollars from people that they wanna know exactly where it went.

But also how do we do that without I know how hard it would be to have accepted help.

Meagan: Yeah.

Ellen: So I'm balancing this whole, how do we tell heart families we're so glad we were able to pay this bill without it feeling really in their face and being able to do that. And so I think that's something like if you talk about pitfalls or different things that I think have been amis of the foundation, for instance, I'm so proud. We funded over $250,000 worth of bills for families last year, and I guarantee you 90% of 'em don't know it was us.

Meagan: But that's amazing.

Ellen: I'm so proud of it. But I will see a lot of times different things on boards. I'm like, we've gotta figure out to how to make it a little bit more personal.

Meagan: Yeah, but people also don't wanna talk about, Hey, I can't pay my bills.

Ellen: Yeah, for sure. Because

Meagan: you wanna talk about that.

Ellen: That could be a study in its own because I would say 90% of the requests we get, 'cause we work, that's how our bill pay assistance works.

I've got relationships within those 11 hospitals with their cardiac social work team, and I'm talking to them all day, every day. They identify the need, get with the parent, submit the bill on their behalf. And the majority of the time it's because the bill was due yesterday. And it is because it's uncomfortable to ask for help.

Meagan: Yeah.

Amy: And it is, it's heartbreaking knowing your child needs this. Even as adults, we need this, but . As an adult, there's a piece of us. I think when we get to a certain age, we're like, oh, maybe we'll just skip this one.

Meagan: Yeah.

Amy: Now, adult, parents don't do that to their children. They're going to go above and beyond for their kids.

Yeah. But I do feel like they're doing this, but something else is then lacking at home, or their bills don't get paid because they have to pay the rent. You pick and choose. Sometimes you're robbing Peter to pay Paul. And when you get to that adult age as a patient, that's when you start skipping on your own healthcare.

Meagan: Yeah.

Amy: Because you're struggling.

. The weight and the load of the financial, and I'll call a spade a spade burden that it is, it's overwhelming sometimes. It really is.

Ellen: The time commitment to all those appointments and energy, brain power that it takes to keep it all organized it's for sure a lot.

Meagan: And then yeah, insurance covers and then you get a bill for 10 grand and I'm like, yeah, let me just pull that outta savings real quick.

Ellen: Yeah.

Meagan: What do you want me to do with that?

Amy: Yeah.

Meagan: And then it just gets tossed to the side and I'm like, Hey, let me pay rent first. Or pay my son's medical bills first, and then go from there.

Amy: I think those pieces are, like you said, how can we be discreet and not make them feel a certain way, but also let them aware like we see you. I think that's important.

Ellen: Exist. Exist to try to take this stressor off of you.

Amy: Yeah. It's not to make you feel a certain way. It's because you know the struggle that is real.

Yeah.

Ellen: For sure. And as motivated as I am for research. In progress to be that there's one day a cure. I will never stop hoping for that. But even the cure doesn't come without scars. And so the support is always going to be needed. And those are the kind of ways we've been trying to balance how much energy, and effort we've put into each and anticipating for the long haul,

Meagan: I think what you're doing is helping now, whereas research is helping the future.

Ellen: Yeah.

Meagan: People need help now.

Ellen: Yeah.

Meagan: So I think what you're doing is amazing anyway and it's helping people no matter what situation they're in.

Ellen: Thank you. I hope so.

Meagan: It is. I can tell you it's

Amy: yes. So on your website you have things.

What can you do to help the donations and the fundraising? Do you find a lot of people come in and do different fundraisers to then donate back specifically?

Ellen: That's where we, I, we have not done a great job of outside of the Nashville area because we are here of really figuring out how to help people, to empower people to do that.

We've had great luck with online fundraisers, but to me, even more important than that is that using that opportunity to spread awareness. Because we were talking about my brother-in-law earlier, he's been telling the story of them living in the hospital with us for almost 10 years now.

July. Brett would be 10, and every time he makes a new post, somebody's oh my gosh, I'm thrilled to see somebody spreading CHD awareness. And so it's am I thrilled that we've been able to, with the campaign that we work on together raise funds to help us do this stuff. We need money to do it, for sure.

But I'm like, how did we miss this person? We've got another, we've spread awareness to at least another corner of the earth. Let's do it.

Amy: Yeah. And it's no easy feat to do a fundraiser and make decent money off of a fundraiser. I, we do one and it's a lot of, I'm. It's in August, and then from the day after when all the money's counted, it's like you need a mental break.

Ellen: Oh, for

Amy: sure. So February one of that next year, and then it's hit the ground running again. Let's get the emails out, let's make sure everything's going according to plan. And we'll be in our fourth year. So it's easier. People know we're coming back, but that first year, and if it doesn't go well, you feel defeated and

Ellen: Oh

yeah.

Because it's so much energy.

Amy: It is. It's energy and it's time. And you, my thing is when I did it a long time ago, we maybe had $2,000 in the bucket. And now with a completely different concept, and so many years later we have so much more. But it's finding things like your foundation, it's finding now things to send it to, because.

When you wanna donate to somebody, there's a lot out  there. Number one, what does it go to? And then it's really finding an organization that resonates with everything you believe in.

Ellen: Yeah.

Amy: It's it's a whole, it's a whole thing and it's not easy.

Ellen: It's hard to find specific funds within the hospital system too, that you trust.

We'll use it now. There've been a couple of different things that I've helped some people connect. That's probably the worst business model if you look at the foundation as a business. But I'm like, let me help you give it somewhere else. Hold on just a minute. But no, it was a friend that I was connected with.

She lost her daughter at Texas Children's, but they're from Georgia. And we were talking through what do you wanna do that is the biggest impact for you, for Clay? And she was like. Parking for parents at Texas Children's is astronomical. They have to pay every single day. And she was like, I wanna do this.

I was like, you've gotta get somebody in the system, whether it's your social worker or a nurse to help you figure out how to really laser  earmark that. And it does exist if you fight hard enough to do it. Yeah. Which is always, it's not the cardiac team that's creating all this red tape for it to work.

It's the imaginary people above I guess. But that makes it tough too because that's when we started, I was like, I understand the endowment funds are necessary and I pray that they get funded, but I'm not interested in me working my tail off for it to sit there for 15 years when I feel this deep sense of urgency for it to be at work right now.

Meagan: That's amazing that she wanted to do the parking tickets. 'cause even here at University of Michigan, that is expensive.

Ellen: Oh yeah, for sure. Even

Meagan: if I'm there for two hours, I'm like, I don't have 50 bucks just ready to go.

Ellen: Yeah. And if you do, you could think of something else to do.

You'd rather do it anyway.

Meagan: Yeah. But that's amazing because it's going to, what's needed for the family right now with make, don't have to think about it. If I didn't have to think about the bills

Ellen: Yeah.

Meagan: During that time, that'd be fabulous. So I think what that part is doing is incredible.

And also the fact that you're doing CHD, but also Down Syndrome. I don't think people realize how common Down syndrome is with CHD.

Ellen: Yeah. Definitely 50% of kids with Down syndrome have CHD and you know that I'm always like. That part of her was my favorite part of her, but it was just a part of her.

Meagan: Yeah.

Ellen: And I just, I regret any second I wasted worrying about it, but I think it's necessary every parent that receives that diagnosis, almost all. You have to go through mourning what you thought and I truly, even though I sat in that for a piece of my pregnancy, I always tell people I had to literally calm myself down before I talk to you because I'm so excited for what's coming your way.

When they get a Down Syndrome diagnosis, I'm like, don't overwhelm them.

Meagan: Yeah.

Ellen: They're not ready to see you. Be like, you hit the lottery. The best thing in that could ever happen. And it, but it, I have seen where every parent feels that way. After they've been in that world, whether it's like us the minute she was born, or three months later or six months later or whatever, but they get there to where they're like, this, it's the best kid in the world.

Meagan: Yeah. I've had the pleasure of working with individuals at Down Syndrome and they are a good time. They're so much fun. A blast.

Ellen: They're definitely, I'm so thankful to still be part of the community here, and there's just several , they're now our dearest friends and I love those kids so much and they continue to teach my other two children so much about the world that it's, everybody's bringing something to the table and they deserve a seat at it, at very least.

Meagan: Yes.

Ellen: I was gonna mention to y'all one of the newest things that we've got on the horizon for the foundation that, like I said, I've been really trying to figure out how do we meet every single need. But we've been working with a group that they've already got an app, but where they've done for most different medical complexities, but we're tailoring it to the CHD community.

It's called my CHD sidekick. We're hoping to launch it end of April, early May. A lot of the families that we connect with are treated for this portion, at maybe their cardiac care at Vanderbilt, but their GI care at Cincinnati or they're in Boston for this, but they're here for that.

And there's not all their information that lives in one place and. This will be an opportunity for literally everything you have to live in one place so that it's, if you keep things on paper, you just take a picture of it. I have to write things down for it to click in my brain, but then I need a picture of it 'cause I lose the paper.

But anyway but it's a place where everything could live. You could track symptoms, you could track, literally everything. Our goal is for it to empower new moms receiving a diagnosis, especially some of the single ventricle patients where they're gonna have some inner stage complexities for the, the first several years.

But also for it to be, in fontan clinic, empowering the teenagers to really,

be their own self-advocate. And there will be places for parents or patients to document what questions I wanna ask. For rounds, for next clinic visit, for this, for that journaling, how they felt before and after tracking progress from an emotional standpoint of what, it's easy to lose sight of that sometimes of how far you've come.

Meagan: Yeah.

Ellen: But the biggest benefit of it, what really made us want to, partner with them and make this available. First of all, the founda, it's an expensive app that we'll be making free for every CHD family, but it's got the opportunity that you could say, I'm going to my dentist. I want to give them only this piece of the information.

You could click what buttons of information you wanna include in it makes a quick PDF that you're like, don't ask me these questions. Here it is. Especially a lot of the inner stage families for single ventricle, they don't wanna relive all of this in the middle of it. They could go through and say, okay, I'm gonna, my pediatrician who.

May or may not understand CHD as much as I thought they would. I'm gonna go ahead and do this and create a version for them. But now for my mom, who's gonna babysit, she needs the least amount of information to overwhelm. Here's the numbers. In case of emergency.

Amy: Yeah.

Ellen: For teachers, for going so on and so forth.

You could quickly create a custom one pager if you're, outta town, going to Disney and you have to go to urgent care, this is what I need people to know I don't want them interested in the fact that I can't take this med from five years ago. This is what I'm currently on.

Meagan: Yeah. That's amazing. So

Ellen: trying to work on that to, keep things as organized, how, it's definitely gonna be a time investment, I think, for people to sign up, which is one of my concerns. But I think that if they could invest one hour

Meagan: Yeah.

Ellen: And we can cover the financial component, it will save so many hours of stress from being like.

I've got all my stuff organized.

Meagan: Yeah. We were literally just talking about, oh, I should probably track these symptoms that I'm

Amy: having.

Meagan: And I'm like, I'll just make a note template and just write it all down. But having that would be so much easier.

Ellen: Yeah. Yeah. That's, I had to wear a monitor.

I've had AFib and different things that, I, I don't know if that's from all of, the stress and whatever, but every time that I was supposed to have the notebook with me to write it down, it was like, you don't three away that I was like, but I always have my phone on me. Hopefully it would make it just easier to keep up with.

That's our goal , how do we try to make life and these processes as easy as possible and if ever that information could help improve, quality of care in the hospital or really make insurance companies understand the gamut of what we're dealing with. Can we use that information to come together to make things better?

Is always my goal.

Amy: Yeah. I think the big for, of course insurance and making them understand that's a much harder feat, but I think letting the providers know and having that relationship with them these are my symptoms. Having that type of a relationship with them, because you, I go in and I'm like, yes, I wanna talk about X, Y, Z, but do I write it down anywhere or I forgot my paper on the kitchen table.

Yeah. It's all those things being at your hand

Ellen: Yeah.

Amy: In an appointment where you can just pull it up, I think those are extremely important and, yeah. Like you said with your, with AFib and anything, just the symptoms that you're having and when and documenting them at the time. 

Ellen: Yeah,

Amy: because three days ago I could have had something and I forget and I can't go back and write it down 'cause I don't remember exactly what the context was and so on and so forth.

So an app sounds amazing. Click call the day.

Ellen: Yeah.

Meagan: Even the fact that , I go once a year to my cardiologist. I don't remember what happened last year. For sure.

Amy: Yeah.

Meagan: So that would be incredible.

Ellen: I hope so. We're hoping to roll it out as soon as possible.

Amy: Yeah, that would

Meagan: be awesome.

I'll promote it as soon as it comes out.

Amy: Oh, for sure.

Ellen: I'd love to share it and get your feedback about how it's helpful and how you think it could be better and what dropdowns make it easier for us. That's really the phase that we're in right now of really. How much would be too many options.

, But yeah, I'll be thrilled to share it with you. Definitely.

Amy: Yeah, that'd be great. I do wanna ask you, I see I was searching on your website and your page. I, there's two things I wanted to ask you about. One would be the Warriors. I love that concept and idea.

And the second one would be Brett's Barn.

Ellen: I love to talk about both.

Amy: Yeah.

Ellen: So The Warriors, we are so thankful to have Suha Dabit on she started out on our board from the beginning. She's a heart mom. Her daughter Nadia, HRHS, ended up having her transplanted too. And she is the, just got spectacular taste and she.

Got just an eye for photography and art and everything. And then she's got this lived experience. And so when she was in the hospital with her daughter Nadia, she was like, we don't have a single family picture together, and I don't know if we'll get one. And she ended up finding a photographer that came in and took their pictures in the hospital when Nadia was on a vad and he wouldn't charge them for it.

And that kindness inspired her so much that she was like, I'm gonna teach myself to do photography in this, in these walls to spread awareness. And I just, in my humble opinion, there's nobody like her. She's, she , gets it from every perspective of being a heart parent. And she, to me, has figured out how to make things digestible for donors that have never heard of what CHD is or they may have, a child that age and it's is too painful for them to look at. I feel like she, she's really helped us spread awareness where otherwise we have no tools to do that. And then she's just really empowered people to be proud of their scars and to make it truly something that they wear with complete honor and empowered them to use it to share their story.

And so she is, has come on board now as our director of awareness and visibility and we travel real well together. So she goes, when I'm meeting with the social work team, she's taken as many pictures in the hospital as she can. And so that helps us so much to be able to share all the warriors.

Meagan: I love that, .

Amy: And what an incredible hobby to pick up. So you can be that person.

Ellen: Yeah.

Meagan: Yeah.

Ellen: And I think it's, that's a vulnerable state. I do remember, I didn't know her when we were in the hospital, but I remember our nurse practitioner, Molly came by and goes, you've got to meet Suha. You've gotta let them come take your picture.

I'm like, my hair was on the side of my head. I had no, I was like, you think I wanna document this right now? And she was like, I know that sounds hard, but you will want to. And oh, I wish I had, I wish so bad that I had, but I do feel like if I had met her and talked to her I would've been like, okay, because I immediately families trust her because they know that.

She's you don't have to show these ever, they are just for you. But if you want to use them for awareness, let's do it. Let's tell your story. And yeah, she, I just couldn't say enough good things about her. But she's the one really driving that and helping us get those beautiful, faces and scars out there.

And then Brett's barn that's my sister-in-law, Caroline Bryan. She promised, so she's my husband's big sister and she promised Brett a little white pony when we were home the couple of months that we were home with her. And Bo and I lived, we maybe have had a quarter of an acre. The backyard was like smaller than the room I'm in right now.

And so Caroline just kept coming. She was like, I'm bringing y'all a white pony and it's gonna live in the backyard. And I was giggling and my husband was like, do not laugh at her. She'll do it. And when we got in the hospital and things, went not as we were expected. I remember her sitting there and she was holding Brett's hand.

She said, I'm gonna get you that white pony. I promised you that pony and I'm gonna get it. And after Brett passed away, we have a mutual friend that works at a rescue barn in Jackson, Tennessee, and she's Caroline, you're not gonna believe this. A little white pony just came in with bright blue eyes.

And Caroline was like, get, give me. I want to rescue that pony. She's a teeny tiny miniature pony that's got the most precious little crooked back legs I love. And she rescued that pony and ano two of 'em and a couple of goats and two donkeys. But now there's 36 animals at Brett's Barn, and Caroline and Luke fully fund Brett's Barn themselves.

That's their, it's really our family's respite from sometimes the heavy work that we do. Our, the foundation office, they also own and find us and is right out the window. All the animals are right there just being the cutest things you've ever seen. We've hosted several smaller controlled 'cause the animals are rescues, so they are aggressive with food like me.

And they, I'm scared to death every time that there's a kid out there, even though they've never done anything, I'm just a worrier that they're gonna be like, Ooh, that finger looks really good. But you can tell when families are out there, they finally relax, they watch their kid, be a kid. We're not worried about so many of the things that all of us are worried about in life.

And it is just truly a wonderful, it's an escape of respite and they have such a calming wonderful, demeanor that they bring to everything, that it's definitely our goal to open it to the public and be able to have bigger bigger opportunities for all of the CHD community to, be able to feel all the love they give.

But it started, Luke had a tractor barn when she rescued the animals and we put 'em back there and just threw his tractors off to the side. He was on the road, he didn't know. And then we painted it yellow. He had his like, hunting orange is what color it was painted with a big buck commander.

And we just rolled right over it and painted a bunch of bumbly be on it. But now, it really is, we feel Brett there and the times that we get beat up and discouraged and like we were talking about burnout and stuff, really 10 minutes out there and I'm like, we can keep going.

We can keep doing this, it really is a special place to us and we try to incorporate the animals. They're our mascots about everything we do.

Meagan: So for right now, before it's open to the public, can people ask to come or how does that work?

Ellen: We've taken our involvement with a bunch of different down syndrome geared organizations.

We've tried to help them fundraise by saying the top three families we can have out here. And then we've done with several other small groups that we felt like we could really maintain.

Meagan: That's awesome.

Amy: I do really love that. I think there's an element to animals that just bring, it just brings joy and happiness and how I'm looking at the photos right now.

I have them up. And how can you not just love a llama or an alpaca? They are the cutest things ever.

Ellen: They're so sassy and the llama, she loves Caroline so much. That's her mama. And so if I come out there, I don't know if it's because my hair's blonde and she gets excited when she sees me coming and then she's you're not my mom.

So she spits at me all the time.

Amy: That's amazing.

Ellen: I'm like, if we ever have a big accomplishment and you get a big head about anything, just let Pekka go. Bring you back down to size real quick. But I do have to share the story behind how she is one of the only non, she's not a rescue. We sought her out because, we needed her was because it's a family friend of mine before Brett was born.

They have two of their boys were on my nephew Carolina Luke's boys baseball team, and they've got five kids. Two of their five have CHD and we were at the ball field with them when I was pregnant with Brett and I sat with Ashley, the mom, and I was like, I forgot that your kids, I saw your Caleb, especially the youngest has HLHS.

And I was like, we just found out our daughter's gonna have to have open heart surgery. And she immediately became my mom mentor, my , sounding board. You gotta have this cardiologist, you gotta have that surgeon. This is who, she has just been everything to me. I need to text her and reminder.

I'll never forget that. But right after Brett passed, Caleb was four or five and he went into heart failure and had to get listed. And so he spent months and months in the hospital . And , we would go visit and show him pictures of the animals and he would giggle. And it was this great we really were like, these animals are really healing us and him at the same time.

And he goes, you don't have a llama. Caroline had a llama about a week later. And so there you go. And then he named her. And that's, so that's all thanks to Caleb. And now he's a teenager. Just, just living his life with nobody having any idea, all the stuff he's been through.

But that's, so Pekka saved all of us.

Amy: Oh my gosh, that's awesome. . .

Ellen: He still spits on me, but

Meagan: it's spit of love, right?

Ellen: Yeah.

Amy: So I know we're coming up on an hour. I wanna ask, so where do you see the foundation moving at this point? You guys are doing so many things, and I know we talked about this is where we wanna improve on things, but as a whole, do you intend on expanding anymore, just making things better and greater, or where do you see it going?

Ellen: So I have many thoughts because I honestly had no idea when we started that we'd be, at this point. It's different where we're needed in every, at every institution, which is great, but also makes it hard to, you can't just go replicate things because they're also, niche. But my goal is for research funding to just get more and more every year we've had better submissions and more submissions.

And I'd like to start tailoring those for there to be the, translational science projects for there to be more projects submitted from nursing staff because they are solving so many of our problems in the first line of defense. They know these kids. I'd love to see more neurodevelopmental specific projects and figure out how are we gonna run the gamut of making it better, improving to the hospital systems.

I'd love for their rankings to be based on, are you doing this for these patients? I feel like there needs to be more specific things like that. I'm thankful that , the psychology part of things are now how they're ranked, but I think that all those other things should be part of it.

, So yeah, I wanna increase the amount of research from all over the world. We funded a couple of projects in Canada too, so I guess beyond nationwide now. But I have several ideas of different programming that I would like to really bring to every single institution, and I've just gotta figure out how to fund it.

But we've got the wheels turning in about different things that we think we could do. To do a better job of fundraising in specific areas to sustain what we're doing in each area. 'cause , we really only fundraise in two little tiny areas to fund all the other different things that we do.

So trying to figure out how we empower the groups to know what we do In Philly, we spend more in Philly probably than anywhere, but we don't fundraise there. Figuring out how to really empower , everybody in the area to know what we're doing and how to be a part of it is definitely where a lot of my energy's going right now.

Meagan: Yeah. Which makes sense. 'cause you just need people to know what you're doing to help.

Ellen: Yeah. Because once they hear it, they wanna be a part of it.

Meagan: Yes, exactly. It's

Ellen: just getting the right people in the room and the right stories being told, and all of them are so important. Every single one of our stories brings a different perspective and a different aspect of it that hasn't been thought of before and figuring out how do we meet all of those needs.

Meagan: Yeah. Yeah. Do you guys have any events that you wanted to shout out or anything coming up?

Ellen: We had our very first community day here in Nashville. That was a massive success last year. . I think it's September 13th this year. It was 14th last year.

We just got done with a Marathon of Heart month events and so that, it's a lot of stuff going on in February and then we calm down and then we have our big event in October that we usually try to, make as public on socials as we can and .

Raise as much money as we can to fund what we're doing.

Amy: What's that big event and when do you know when?

Ellen: It's in October. October 24th.

Amy: Okay.

Ellen: And it's in Franklin, Tennessee.

Amy: Okay. .

Ellen: And yeah, we just do a, as much as we can of how much awareness can we pepper into every bit of every party without it being like, this seems like an odd thing to talk about while you're riding a mechanical bull.

But I'm like, how do we make it happen?

Meagan: Listen, I'll just pick up Amy on the way and we'll just drive on.

Ellen: Okay.

Amy: So assuming these are, obviously, as they come up, they're all coming out on Instagram, do you also post these on your website?

Ellen: Yes, we

post 'em on our website.

Amy: Okay..

Ellen: Brett boyer foundation.org?

Amy: Yep.

Ellen: On Facebook at the Brett Boyer Foundation and on Instagram at Bright for Brett.

Amy: Okay. And we will list all those in the show notes so that way everyone can just click on 'em and go to 'em and hit follow.

Ellen: .

Thank you.

Amy: You're welcome. Thank you so much for joining us. This was such a fun conversation. I, oh my gosh,

Ellen: I truly could have yapped for hours. I enjoyed it. Every second of it, so thank you for having me.

Amy: You are so welcome. . You have a wonderful night.

Ellen: Thanks y'all. You too.

Amy: Thank you.

Meagan: Thanks.  Bye

Amy: bye.

Meagan: I seriously love her.

Amy: The whole idea of, I love the fact, obviously it is CHD. But what I think is also really incredible that is not something we focus on a lot is the Down syndrome piece and how many days ago?

It being Down Syndrome Day. Yeah. And being able to talk about it right around this time. I know it won't, this won't be released around the time. Yeah. But they're taking two big pieces of life and mushing it together and creating and it, the thing about it is it doesn't just help Down Syndrome.

CHD patients. Like that just so happens to be their story.

Meagan: Yeah.

Amy: But they're still helping everyone

Meagan: and I like that what they're doing is helping now. Yes. I love all organizations that are focusing on research and Thank you.

They're  focusing on the financial part. The hard parts, the clothes were, if your kid passes , I never even thought of that.

Amy: And I think that's the thing. I was just gonna say that too. It's the things you don't think about. Yeah. Just like the one interview we did as well, who would've thought a cake for a birthday would make such an impact. But you don't know until you're in that situation to think my baby was so full of fluid, they couldn't even wear their own clothes.

Meagan: Yeah. And

Amy: this is what I feel is important for a parent to have. And the other thing I really love that she said was, she mentioned the piece of so many people saying, I'll pray for you and your husband and her thoughts on that. However, that is a huge piece because the strain on a marriage I cannot even comprehend.

How some families make it through those difficult times, regardless of whether or not your child grows up to be an adult or the unfortunate passing, it's all still stress on a family and on a marriage. You go to bed at night and that's probably one of the more alone times you have if you have a family to talk about these things.

But then to have the resources for the mental health piece of it is also huge. I think there are times we miss out on that as well.

Meagan: Oh yeah.

Amy: And for them to partner with Ollie Hinkle to support so they're not creating the, a whole nother piece of the pie. They can then support.

Meagan: They're just working together.

Amy: Yes. They're supporting another foundation who is doing such amazing things for CHD.

Meagan: Yeah. Apparently, I don't know if this statistic is correct, but 12% of families don't stay together after a CHD diagnosis.

Amy: I'm

not

surprised by that.

Meagan: I'm not either. My parents were one of them. So granted it wasn't right at diagnosis or right after the Fontan, but , I was still seven.

So the stress on a family with no support or even financial support or mental health support has gotta be astronomical.

Amy: And to think, I, I do think about, and I know we say it a lot. I was born in the eighties.

Meagan: Yeah,

Amy: and you clearly not far behind that. But the resources, like they're out there today.

Were not like that in the mental health wasn't talked about, let's be honest.

Meagan: It's barely talked about now,

Amy: and the idea of someone creating a foundation to help you with a bill, I still think it's taboo and I shouldn't, I don't know how to word that i'm gonna say it's taboo in the sense that families don't want to ask for the help.

Yeah. But let's be honest, the financial burden is insane.

Meagan: Oh yeah. My dad told me that he would write letters to big companies and then they'd never get a bill. And I'm like, wow, never really thought about that.

Amy: I interviewed a mom. She lost her son to HLHS . And she said towards the end their bill was like a million dollars.

Meagan: Oh wow. I'm like, like million dollar babies.

Amy: And that's the thing, when I was saying as a parent, you're going to do it. You will rob Peter to pay Paul,, but as an adult, as we grow up and we are living it, we skimp out on our care.

Meagan: Yeah.

Amy: Because it is so difficult.

Meagan: Oh yeah.

Amy: I'm really glad that she was able to sit down with us I mean her especially, to be able to sit down with us.

Yeah. And we hear it from the founder.

Meagan: Yeah. And I think it's also amazing that yes, she's just happens to be related to Luke Bryan, but he is using it to help.

Amy: Yes. For good. Yes. And like you said, she just so happens to be related, but They seem like the kindest human beings ever. They all do. Your passion is this, and you created Brett's Barn and now you're taking care of animals because it makes you happy and it makes people happy.

Meagan: Yeah. . It's exciting.

Amy: It is. I love it.

Meagan: This was so good.

Thank you so much for joining us and keep sharing your story and supporting one another,

Amy: and be sure to tune in to our next episode.