Why Drowning Can Happen Even When Kids Know How to Swim | Annemarie Miller

Welcome to the Legacy All-Stars Podcast. We feature inspirational stories from people who dedicate themselves to helping others. Here is your host, Alan Pavlosky.

All right. Welcome to the Legacy All-Stars Podcast, where we highlight leaders who are using their talents, influence, and experience to make the world a better place. I'm your host, Alan Pavlosky. My guest today is Annemarie Miller, the founder and CEO of Project One Cause. A nonprofit organization dedicated to supporting children and families after a child survives a drowning incident resulting in brain injury. For Annemarie, this work is deeply personal after her own family experienced the unimaginable journey of a pediatric brain injury and a long-term recovery with their youngest son. She discovered how isolating and overwhelming life becomes for families once the emergency phase ends. In those moments when the headlines fade and the community support quiets down, families are often left navigating an entirely new reality without guidance or resources. That experience inspired Annemarie to create Project One Cause, an organization that walks alongside families during recovery, offering peer support, guidance, and financial assistance for critical therapies, treatments, and adaptive equipment. Her mission is simple but profound: help families remain consistent in care, regain stability, and move forward with dignity and hope during one of the most difficult seasons of their lives. Annemarie, welcome to the show.

Thank you so much for having me, Alan. It's an honor and a privilege to be with you today.

It's total honor for me too. We met at the Lee Steinberg event at Super Bowl recently, and I was just very touched by the story and very interested in finding out more about how the organization operates. So let's get started with our questions.

All right. Well, first I'll give you a little bit of background. Our youngest child was 17 months at the time that he found his way through a closed barrier and made his way and fell into our own backyard pool at our home. Um, it only took a matter of a few moments. We were all home. Drowning is a silent event. And again, we had a barrier in place and to this day, we still don't know how he got through that. But we found him, pulled him out. I started CPR poolside, and he was transferred to a local hospital where he was revived after an hour, transferred then to Children's Hospital in Orange County. After about 3 days of being in the intensive care unit, that's when the, the worst news started coming. Never mind the fact that this happened, but the doctor started talking to us about withdrawing care, and there was really no hope for him to recover. Donating organs, things that you never want here as a parent in any situation. Interestingly, those are the few conversations I kind of remember at that time. There was a lot of things going on. We have 5 other children that we were having to coordinate care for during this time at the hospital. But my husband and I at that time decided that we were going to lean really hard into our faith first and then whispering over that hospital bed about maybe what science could find or what kind of resources would be available in the years to come. If we said no to their suggestions. So we said no, we did not want to withdraw care. And then Kalem came out of a coma 3 and a half weeks later, I believe it was, still at Children's Hospital, but they transferred us now to a rehab facility where then the conversation became, "Your son is never going to get better from this massive brain injury, so you really should think about institutionalizing him and going home and raising your other 5 children." And we were met with that week after week from a variety of medical professionals and just thought, "There's got to be something else that we can find or do." So against the better advice from the medical professionals, we decided we were going to bring Kalem home and see what we could find out. So after 5 and a half months in the hospital, we brought him home and then I got to work looking up things and trying to find resources. Resources. That was really difficult. You know, that was in 2007. Of course, the internet was out then. There was all kinds of things, but there was nothing related to pediatric brain injury survival or the type of brain injury it actually was. The doctors told us, you know, after 6 months, if he didn't make any progress, the likelihood of him having a viable life or any kind of life was basically nonexistent. And that he would be met with all kinds of challenges in caregiving and the toll on our family and all of these things, all of these negative, no, not be able to, and we decided that we would just continue to look. So I found a resource a few months after we brought him home, an institute in Philadelphia, the Institutes for the Achievement of Human Potential. They knew about neuroplasticity 50 years before it became something that was known in the medical community. So we took Kalem there 6 months later and started our journey with that program. We did that for 10 years, and then along the way learned about all kinds of other resources that were outside of the scope of traditional therapies. Because what we found too, Alan, was that therapies for this kind of an injury— first, the doctors don't really know what they're looking at, so the prognosis of course is as dire as I explained. But then the therapy components Most of us understand, you break your leg, you go to therapy, you rehab, and then you go on your way. This is something that's ongoing, but also the baseline that the therapy teams would set, the child, my son, couldn't make those. So then he started getting less therapy instead of more, which is really what they need in order to progress. So all those things came into play and a lot of it was It was very uncomfortable navigating something where you didn't know where to go or who to ask or what to do. So Kalem has made incredible progress. He's 20 years old now. He's thriving. He's got a great quality of life. He's cognitively all there. He does have some severe mobility issues, but we were able to show the doctors that, you know, hey, the brain can recover given the right circumstances and the opportunities that you can give a person or a child specifically with a brain injury where those kinds of things can repair. You can teach neurons to wire together and fire together and then regain some function. And so it's been fascinating to watch Kalem's recovery all these years. And then of course, along the way, we've met so many other families in the same situation. So it's been very unique for us to coach families for many years. They want to find out what we did and how we did it. So we were doing that. And then pre-COVID, I had a colleague that I was working with out of Canada. He actually was a neurorehabilitation specialist that had worked with Kalem. And I started talking to him about the fact that I was still hearing from families years after our original incident with Kalem that They were coming home from the hospital with no resources, no information. You know, if your child has cancer or diabetes or something, you know, leukemia, when you're discharged from the hospital, you come home armed with information and resources and who to call and where to go. And in this specific population, there aren't any of those resources. There still are not until now, but we started talking about Maybe we should create a brochure so, you know, you can hand that to the parent when their child is discharged. How would that serve these families? At least they would have somewhere to look or somewhere to investigate. And then it kind of morphed into, well, why don't we just start a nonprofit? And so I decided, you know, let's go big because this is something that needs to be talked about. It needs to be known in the communities, but then this is an invisible group of children that actually need help and support, and these families need a guide and resources. So that's how Project One Cause came to be born.

Nice. I mean, there's a tipping point in many kinds of businesses, but your organization, the tipping point was a personal tragedy. I think it's fascinating that your mentality was that to help others, and that's what this show is all about. So I'm really happy to share that. Many people rally around a family during the initial crisis, but life can become more difficult after the emergency phase ends. What does that transition look like for families dealing with pediatric brain injury?

Well, and that's very true. We experience that ourselves, and I know families that are still having that as they go through the initial phase of the acute injury. And that's the other reason why we wanted to start Project One Cause, because there is a rally, you know, community, family, everybody wants to figure out how to help, you know, prayers, donations, or whatever they can— time to help these families, help our family. But once the dust kind of settles and the reality comes in, you know, again, there is not a lot of resources or not a lot of help out there. So Project One Cause was designed to fill that gap that after the trauma, the initial acute phase happens, what can we do to continue to support these families? And so we provide, we have a great peer support parent mentoring team that we have developed. We have two moms, Nicole Wood, whose son Robbie had his accident, I believe, 3 years ago. And Jamie Dorsey, her daughter Juliette is about almost 3 years out of her injury from her drowning. And between the 3 of us, we are the parent mentor team. And so we have families connecting with us, asking for help. And typically a lot of times it's at the beginning, but then it's the year or 2 later. In my particular case with my son now, Kalem is now 20. Life is very different now that he's an adult. And so I'm gaining all that wisdom for the next phase of parents who are going to need that kind of support. But really, we exist to support those families ongoing throughout their entire journey with their child in this brain injury world that they're in.

Yeah. I'm struck by how different this kind of injury is. And there's, as you said, diabetes or cancer, there's so many resources available. Can you share a story from a family you've supported that illustrates the impact of Project One Cause?

Yes, I can. I can actually share a couple of them. So one in particular, we actually knew this family prior to Project One Cause being started, but they reached to us after we became an organization. And their daughter, it was a very large family. Their daughter was one of the youngest of 5, and it was about 4 years after her injury. It's a very outdoorsy family. They still like to go do hikes, but Gracie is her name. She loved to be in the pool still with her family. And in order to do that safely, she needed a very special piece of equipment given her challenges. And so that was our very first family we were able to help by providing that device for her to— and to just to see the look of joy on her face and then the way the family looked. Being together, to be able to play together and have that joy again, it was just so moving to me. And part of the reason why we want to continue to do this— another family, I just got a text message from the mom this morning, and they reached to us to do a treatment, hyperbaric treatments, which we were able to offer them, which has made a significant difference in things like spasticity and his inability to move. Which has now improved that part of his condition. But she sent me a video this morning. I just thought it was so timely because we were going to be talking today of him laughing for the first time ever, and he's 3 years out of his injury and just laughing, and the whole family is just weeping and so grateful. And those moments you know, might not seem significant to a lot of, you know, typical folks or regular families, but those little victories are so significant for these kids when you think about how their life looks and how that kind of a situation where the child is getting better not just helps the child heal, but the whole family is benefiting from that result. It's fantastic.

Yeah. Could we go back to neuroplasticity, the neuroplasticity of the brain? Because ultimately what brought you and I together and how we met was my good friend Nicole Roberts, who runs the Brain Health Summit and who has been on this show before.

Yeah.

She runs the Brain Health Summit at the Lee Steinberg event every year. And Lee is very much a proponent of finding ways to help people understand the power of the brain. Tell me how you learned about the neuroplasticity of the brain and of course your experience yourself. But what was it that really cemented the idea that the brain is a miracle part of your body that can heal itself?

Well, so I mentioned the institutes in Philadelphia. Glenn Doman started that, and they had found that, you know, there's hundreds of thousands of ways to put input into the brain in children. And so that was really the first place that I understood it clearly from our personal situation. But things like Norman D. Oodge wrote the book, The Brain That Changes Itself. It's a fascinating read. It applies to all of us, no matter what stage of life that you're in. But the pediatric part, you know, started learning so much about neuroplasticity. And, you know, the brain grows the most from the ages 0 to 6. So our other aim at Project One Cause is to do early intervention. The sooner we can get these children access to therapies, access to interventions, to tap into that neuroplasticity growth normally, aside from the injury, is significant to their improvement. And then again, you learn about it in puberty, which, you know, we experienced all of these things with my son, and now that he's 20, we're still seeing improvements because really our brains are plastic. They're our entire life. But again, it's the method into how do you tap into that neuroplasticity. And again, Our program with Kalem entailed things all day long. When he started out, I didn't mention this, but he was cortically blind, he was immobile, and he was also insensate, which means he had no tactility. You couldn't get him— if you pinched him or stabbed him with a toothpick, he wouldn't move. So we learned methods and ways to wake the brain up and then to make those neural pathways connect That's a passion of mine. I think I mentioned to you previously, the more I learn about the brain, the less some days I feel like I know. But when it comes to that, what we're seeing, especially in the therapy world, the medical community is still dealing with a lot of aspects to learning and research and all of that. But I've noticed in the last 10 years, the therapy world has really come up and participated in a way to address neuroplasticity, especially in these really complex cases with these children where there's multiple aspects of brain injury going on, but really that neuroplasticity component is there. And so Project One Cause really is devoted to that early intervention aspect of providing access to therapies, to treatment, and to medical equipment. So that's our aim. The other aim.

Yeah.

Wow.

I mean, in so many ways, it's a triumphant story because you were given this prognosis that was just doomsday. And through your, you know, real personal bravery and your family's personal determination is what really helped Caleb recover over time, is what I'm struck by. And I think it's important that people gather information about the neuroplasticity of the brain and other injuries because, you know, the body's an amazing thing and many ways can heal itself as long as, you know, the support is there and as long as people really commit themselves to that process. Can you tell me more about how you're helping families? I know you have this peer support group, but how are you helping families understand that prognosis is not necessarily accurate all the time?

Well, we do have resources on our website that help families, but honestly, it's that one-to-one interaction when we get the phone call and, you know, to help parents become advocates for their children and also question You know, like we did not question, we just decided we're gonna go home and figure this out. And I think that says a lot about the parent mentoring. I mean, I know that's part of what we do, but really that's the most impactful thing to really help parents navigate. Now, like I mentioned earlier, the internet was out there in 2007, but it's nothing like what's out there today. And so the parents are inundated and overwhelmed to a degree, in my opinion, is even harder to navigate when you're trying to figure out, well, which one do Who do you go to and how do you trust this method and what does this look like? And so what our goal is to guide families. Of course, every family needs to find out what's best for their child and their circumstance. Of course. Right? So that's something that we're very aware of, but we're in the business of hope and help. And so we navigate those conversations and we spend a lot of time with our parents that reach to us. But the other aspect is neuroplasticity. I wanted to, to also share with you Dr. Peter Fox out of San Antonio, Texas is the very first medical research doctor that has done a study on this population of children. And he has published the very first white paper on this group of children, non-fatal drowning survivors. He was funded partially through Liz Tulis through her nonprofit called Conrad Smiles in honor of her son Conrad. Who suffered a non-fatal drowning at 17 months. Unfortunately, Conrad has passed away now, but Liz helped Dr. Fox fund that first-ever study. And what that white paper shows is that these children are cognitively intact. That has huge implications. I mean, for all these children where the doctors are giving you this, they're never going to do this, and this is not going to happen, never, not nothing. And so Project One Cause is now in the business of turning no into numerous opportunities. That's our new definition of no. And connecting these families to Dr. Fox's research, which is also on our website, so they can also take that to their pediatrician, to their neurologist. So there are strides being made, but again, it's about that support for those families at the very beginning and throughout the process as their child navigates this. You're talking about Lifelong disabilities that change, and then the child needs something else that maybe will be more suited to their recovery at that time. And we're here for the duration of that.

Wow. Amazing. You know, operating a nonprofit is hard. I've done it. I work with people that do it, and it's not easy. There's many challenges to running a nonprofit, but the biggest one is usually funding and finding ways to fund initiatives that are going to serve people and serve the greater good. For listeners who are moved by your story, or donors who are inspired by your story, what are some ways they can get involved to support Project One Cause?

Well, we have a couple fundraising events throughout the year, although they're more local. But the best way is on our website. We have a couple of ways to collaborate with us or partner with us and also donate through our website. And then for major donors, is to develop a relationship. We want people to really understand what our mission is, that we're here to provide hope to families and help to them so their children have the access to all of these things, because it does make a difference for their life. And I was thinking about, you know, the donation and how those things go, and I think really I did want to share some statistics so people that are listening will really understand this. But, you know, drowning is the leading cause of accidental death in children ages 1 to 4. And I think most of the, the country kind of knows that drowning is a problem in the pediatric population, but I will gather to say that most of your listeners, including you, may not know that there are 22 non-fatal drownings every single day in the United States. 22 a day! That's according to the, the American Red Cross, the CDC, and of that 22, most of those are children. Out of those children, 4 of those will be left severely brain injured and dealing with lifelong disabilities And when I talk to service groups or do presentations, I think that is what strikes most people as— it's an unbelievable statistic. And we want to talk about it. We want to talk about it so the community knows that this is a real thing, that it's going to happen. As much as we love our drowning prevention and water safety aspect of what we do, when there's children and bodies of water and curiosity, this is something that has been an ongoing issue. So we want to talk first so families can have hope and heal. And secondly, to let the community know that there are ways that you can help. Every dollar makes a difference. Everything that you can do to help these children thrive and access what they need to tap into that neuroplasticity is really a profound statement for you to be able to change the life of a child and have them live their best experience while they're here.

You know, I think it's important for people to know that it's not just people that haven't trained their kids how to swim or that, you know, are somehow being negligent that this could happen to. Tell me more about your personal journey and how much that is related to the swimming field.

Well, Alan, I was a competitive swimmer training for almost 10 years through the '70s, trying to make it to the Olympics in 1980. Made Olympic trial times. But during that, I was also trained at the age of 16 by the American Red Cross to teach swimming to babies, which I loved. I taught swimming lessons every summer. I taught all through college. I taught our children to swim. I taught Kalem to swim. Kalem fell in our pool December 31st, 2006, in the afternoon. That July, he was in the pool and was pool safe. However, despite all that training and the barrier, we had a pool with a gate. My husband had to open the gate to get into the pool area to pull him out of the pool. So we had protocols in place. We had what we thought was going to be enough of a barrier. I taught him to swim. It was December 31st. It was cold. He was in jeans, a jacket, and shoes. So Despite me training him to swim that summer, there was no way he was going to be able to make it to the side of the pool. That being said, we've also learned over all the years talking to other families where, you know, you ever see the ads where they have the elephant standing on the pool cover that's tied down to the pool? A 2-year-old undid that and went underneath the COVID I've had families getting in touch with me where the 2-year-old, for— with some Herculean strength, is able to push the lid off of spa and go in there. I mean, the protocols are in place, the systems are in place, and this still happens no matter who you are or what safeguards you may have in place. I was actually fortunate enough to do— the fire department in our town did a little video for us about drowning prevention, and I state in that the only guarantee that you have that your child will not drown is that your own eyeballs have to be on that child. And that is true for most all our cases. It's just such an unfortunate situation, and given what I was able to teach my child, still wasn't enough to prevent this from happening.

Thank you for sharing that. You know, this show is all about legacy. I wanted to ask you a very important question. When you reflect on the work you're doing today, what kind of legacy do you hope Project One Cause will leave for families in the future?

I want us to carry this onward and upward and outward. I want this to become something that is well known, where people can come to for help, for resources, that they can count on somebody being there to help them navigate the— one of the worst situations you could possibly imagine as a family, as a parent, as a caregiver, and that we are able to support that through helping them navigate the treatments and the therapies and the options that may be out there. And, you know, I can't take credit for my son's recovery because he did all the work. And so for Kalem's Legacy, that's what we want, every child to have the opportunity to continue to access, to grow our organization so we can reach more families and help more families get what they need to help their children thrive and have their best chance at their recovery.

Amazing, amazing. Annemarie, your story is a powerful reminder that even in life's most difficult moments, purpose can emerge. What you and your family experienced could have remained a private hardship, but instead you've transformed it into a mission that supports and uplifts other families facing the same journey. That's a powerful statement right there. Project One Cause is not just about recovery, as you've told me, it's about restoring dignity, hope, hope and stability for families when they need it most. I couldn't be more grateful for the work that you're doing. Thank you very much for being with us today, and I'm just so touched by the personal sacrifice that you've made to make this happen.

Thank you so much, Alan. I appreciate you and all that you do, and I'm so grateful for being with you today. Thank you.

Yeah, for sure. To our audience, if you're inspired by this, please visit Project One Cause, the website. Give me the website again.

It's projectonecause.org.

Thank you. For those of you who are joining us on the Legacy All-Stars Podcast, our mission is simple: to highlight leaders who are using their talents, influence, and resources to make the world a better place. And this conversation certainly applies here. If today's conversation inspired you, please share this episode with someone who believes that success is most meaningful when it creates opportunity or healing for others. Until next time, I'm Alan Pavlosky, reminding you that the greatest legacy we can leave is the positive impact we make on the lives of others.