GRIEF AND LIGHT

Grieving One Child, Racing to Save Another: The Docobo Family’s Mission of Hope

• Nina Rodriguez • Season 4 • Episode 74

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In this moving episode of Grief and Light, host Nina Rodriguez sits down with Bryan and Danielle Docobo to explore their journey through profound loss, love, and advocacy following the death of their son Ethan, who passed away from the rare genetic disorder Coats Plus Syndrome. As parents navigating complex grief while raising their surviving son Liam, who lives with the same diagnosis, Bryan and Danielle speak candidly about the emotional, spiritual, and logistical realities of their path, as they work against time to save him.

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How you can help:

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Danielle, a dedicated pediatric nurse, and Bryan, a real estate attorney and podcast host, share how they turned heartbreak into hope through the creation of the Coats Plus Foundation. Their mission includes fundraising, research, awareness, and building a supportive community for families navigating rare diseases.

This heartfelt conversation covers the duality of grief and joy, the spiritual lessons they’ve learned, the importance of vulnerability, and how taking action has become a healing force in their lives. Whether you’re a grieving parent, a rare disease advocate, or simply someone walking through loss, their story reminds us that love never ends, and neither does the impact of a life, no matter how short.

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Takeaways:

  • Grief is lifelong and evolves with time. It is not something to “get over,” but something we live with.
  • Naming the problem (such as a diagnosis) allows families to shift into problem-solving and advocacy.
  • Community is everything. Whether through foundations, peer support, or safe spaces for grief.
  • Rare disease diagnoses are devastating, but can serve as a catalyst for collective action.
  • Guilt is common when balancing the needs of multiple children in medical crises.
  • Hope lives in action—advocacy, fundraising, and awareness-building create purpose from pain.
  • Spirituality and brotherhood provide grounding during uncertain times.
  • Men also need safe spaces to express grief and vulnerability.
  • Special needs children contribute immense value and joy to their families.
  • Presence is everything. Ethan’s life taught them to cherish every moment.
  • Taking action, through storytelling, fundraising, or showing up can be a form of healing.
  • You can be in grief and in joy; it’s not either/or—it’s both/and.

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And I held her and I said, it's okay. Now that we could define it, we could attack it. Let's find a way.

And it didn't take more than a few moments after that that we looked at each other and we said, about Ethan?

You just lost your loved one. Now what? Welcome to the Grief in Life podcast where we explore this new reality through grief-colored lenses. Openly, authentically, I'm your host, Nina Rodriguez. Let's get started. How do you keep hope alive when you find yourself in a race against time to save your child's life? Today's guests are Bryan and Daniel Dacobo, whose journey through love

loss and purpose is as powerful and inspiring as it is heartbreaking. Danielle is a pediatric nurse, bringing deep compassion to families in crisis through her professional and personal experience. And Bryan is a well-established closing attorney and co-host of The Gentleman's Tribe Show airing weekly across South Florida. Today, however, you'll be hearing from them as Ethan and Liam's parents.

a husband and wife team who co-founded the Coats Plus Foundation after losing their youngest son, Ethan, to this rare genetic disorder. Now they continue to fight for their eight-year-old son, Liam, who lives with the same life-threatening condition. Our hope is that through this conversation, we reach the right hearts at the right time, because you never know if you might be the person who can make a difference in Liam's story.

and all who have been affected by this life-threatening syndrome. With that said, Bryan and Danielle, welcome to the Grief in Life podcast.

Thank you. Thank you for having us.

It's an absolute honor and for everybody listening and watching, this is a very personal episode for me. We met about 10 years ago, roughly, under very different circumstances. We were both in the real estate world prior to knowing any type of loss and grief in this context. And this is once again, proof that life truly can change in the blink of an eye. And before we delve into the story again, I just want to reach everybody's hearts listening and watching.

and really search within yourself to see if there is some piece of this puzzle that you can help put together. So as we get started, I would love to hear from both Bryan and Danielle, who was Ethan and what was life like before this diagnosis?

Well, life is, yeah, no, it's, it's a life is a roller coaster even before, before this, but I think that's just the nature of life. And in the midst of that of, know, we starting a family, buying the house, worrying about, we buying in the right school district? You know, are we, you know, Danielle and I used to live on the beach in Fort Lauderdale and

The thought of moving to suburbia was just, you know, like a fate worse than death. But, um, but then we, we made our way out here for, uh, to plan a life and, thinking about this, everything that we've done in our lives, going to school, going to grad school or going to law school, having an income, having a career, trying to the perfect spouse or that would be the best mother, best wife.

And likewise, hopefully she was thinking the same about me. Everything we did in our life.

was to have a family. And we do have a family. It was just a, sorry, a bit different than we expected. So when we had children, we had a very interesting birth history with both of them. The doctors didn't know what was going on and they said, hey, this was an aberration when we had Liam, you know, was low amniotic fluid.

Everything was going along swimmingly with the pregnancy and then all of sudden, surprise, Liam's got a comment, 34 weeks, and when he came he was 2 pounds, 12 ounces, very small. And while that was dramatic in and of itself, ended up growing and becoming this happy boy and completely healthy, or so it seemed. We got to a place where we decided to have another child, give Liam a little brother or sister, and that came in the form of a boy, Ethan.

And the aberration where we were told this will never happen again happened again. And ultimately that time was a little more intense. Ethan came at 27 weeks, one pound, six ounces, and had additional complications in the birth history. But even then, we spent four months in the NICU. He came home and we were a happy family. We were all under one roof.

And Ethan at the time seemed like he was progressing along as normal. And maybe it was just something with our bodies, something we didn't understand. But we felt that we were on a path. Shortly, a few months into it, we realized that we may have additional challenges where we were...

where he was starting to refuse the bottle. We had some failure to thrive issues. Other thing, wasn't hitting his milestones like rolling over and things of that nature as we would have hoped, but he was a happy kid. He was smiling, he had this laughter and love to his heart. And even if he couldn't, he's a child, you felt the essence in his soul there was there for you.

We still have, I feel, a wonderful relationship with Ethan. And we were happy family. While we were going through the challenges with Ethan, it was brought to our attention from Liam's school that he was having some learning difficulties and other things. Now, as parents, we were hitting the ground running, getting him counselors and things of that nature.

And we almost felt we felt sad in the sense of we're so focused on Ethan in this traumatic event that did we take our eye off of Liam? Did we drop the ball as parents? Did we mess up somehow and have him on a path to where he's not going to achieve his milestones and be where he's supposed to be in time? It was shortly after where Liam was four years old, Ethan must have been one years old, where Liam had a grand mal seizure, which is

terrifying, terrifying. And that was probably one of the hardest things I've ever had to see. He was rushed to the hospital and at the hospital, they did an MRI as a standard operating procedure at times where these seizures would happen. And they discovered calcifications and cysts all over his brain. And as Danielle's a pediatric nurse, been able to read this information and, know, tapped into the app.

I'll never forget reading the words on that MRI report, which read,

longstanding, ongoing, destructive process.

We didn't have a diagnosis at that point in time, but we had options for diagnoses, and none of them were promising.

It was.

Shortly after that, I got a call from our doctor, and Danielle was working that day at the same hospital.

And she says, you know, Hey Bryan, I think you need to come in. You have a Danielle. And I said, do we have, do we have a diagnosis? She just said, Bryan.

You need to come in." And I said, is this the kind of thing where Danielle would be able to go to work after, or should I try to make arrangements for her to have the rest of the day off? And she said, I think that Danielle's gonna want to go home.

after we meet today. So I'm Vanessa Daniele, caller supervisor. And I said, hey, know, is it okay if we have the rest of day off?

And of course, Joan Amagio's Children's Hospital has a team of people that are lovely human beings and people that have supported Danielle greatly. was a no-brainer. They said, yes, of course. And we went into Dr. Arroyo's office and she got back the results from a genetic report. And she said that he tested positive for

Coats Plus. Danielle immediately.

hit the floor, make it solvable. And I'm just standing there as a husband and father knowing I have to be the strong one in this moment.

And I held her and I said, it's okay. Now that we could define it, we could attack it. Let's find a way.

And it didn't take more than a few moments after that that we looked at each other and we said, about Ethan?

And in our hearts, we already knew the answer.

We already do. And it was confirmed just a few weeks later that both our children have this life-shortening rare disease. It's really quite a disease. Every cell in their body is malfunctioning, leads to certain destructions. The blood vessels in their body is a manifestation of bleeding.

bleeds to swelling in the eyes, redness of the attachment in the brain, it causes calcifications and cysts. It leads to bleeding throughout the body, including the GI tract, and that's ultimately how we lost Ethan. As part of this process also, it's leukodystrophy. So, while we take a healthy child like Liam,

could run and play.

It's watching him break down in front of us.

Watch his confidence erode.

and frustrations that he may not be able to do what the other kids do.

It's a tough, tough thing to watch. the, hopes and dreams and expectations we had of our children.

With each pace.

is a whole nother grieving process.

I'm going to take a pause here and I want to acknowledge just that was really hard to get through and my voice is even shaky because just even listening and imagining what that was like is it truly is just devastating. want to acknowledge that you're this is grief. There is so much grief in this and this is something that lasts a lifetime and it will impact you for the rest of your lives and no matter how much we learn about

life after loss and embrace that we are always connected at the end of the day. This is truly, truly devastating and I am so deeply sorry for all of it. And I thank you for your willingness to share. And, you know, if you're listening and watching and can relate to this experience, my heart goes out to you, our hearts go out to you as well. And the importance of sharing these stories is because

This is not something that should be experienced in loneliness. We don't want Bryan and Danielle to be alone in this and we don't want other parents to be alone in this. So this is really a tough conversation, but I also thank you for shedding light on it and educating, creating awareness and sharing your story. It's so very important. Your tears are so very welcome here. It's all part of it. So thank you. I also want to highlight that

This is not only just rare, but it's very rare. It's on the spectrum of rarity. It's pretty significant. So if you could give some perspective on what is Coats Plus and in layman's term, not scientific or medical terms, obviously, but just an overarching view of what it is. You already explained that it affects the eyes, and it's something that seems to be degenerative. I don't know if that's the appropriate word, but...

It's and and I'm gonna try not to get scientific or overly tactical but a little bit might be necessary. This disease has only been understood since 2012 where Dr. Yannick Crowe out of Edinburgh United Kingdom discovered the link between this genetic mutation and this particular disease. So it's very new. It's so new in fact there was we had nothing. Doctors

didn't know anything about this disease. We've been to Boston Children's Hospital of Philadelphia, the National Institute of Health, the Miami Stem Cell Institute, and there was just nothing. So out of this, Danielle and I looked at each other and we said,

Are we going to give these kids the best life that we could give them? Or are we going to try to make a difference? And very quickly we said, let's do both. So we started a foundation, the first of its kind, the Coates Plus Foundation, to battle this rare disease. Every parent I connected with said, thought we were the only ones. We've come to learn our communities much broader. We started the first Facebook page on this. We started the first attempts to interconnect a broader community. And out of those connections,

And out of, quite frankly, my weekends, my spare time, this is before Chach-EPT, was sitting down and reading these medical journals where everything looks like hieroglyphics, but when it's your kid, you're gonna figure it out. We were able to come across a study where it wasn't the same disease, but it was a similar disease, LeBrun syndrome, where it manifested with calcifications and cysts in the brain. We learned from that report that in that study, they gave a specific type of drug, an anti-VEGF drug.

that got rid of the bad blood vessels in the body. We were able to collaborate. There was a trial data in I'm sorry, Missouri, that was the first one to receive this treatment and in his brain the calcifications insist stop too. So we were able to get control over the angiogenesis that was leading to this poor outcome. Now this is a band-aid. It is not a treatment to really repair, but at least

When we're looking at the MRI, we're not seeing those progressions anymore, which is fantastic. And also gets rid of the inflammation, which in turn is an additional part to the leukodystrophy. Unfortunately, Wyatt that lived in Missouri, he was older. He was 16 years old and he is now passed on. The day that I flew out to his funeral, his mother, who is a director of the Coates Plus Foundation as well, when I saw her and she saw me for the first time with her own eyes, we hugged.

that we broke down. And while it was tremendously sad, why it would brought us together, there was that feeling of lifting each other up in that moment. And as I was at the celebration of life after the funeral, I got a call from Dr. Arroyo and she said, you need to get your wife on the phone.

because that's when we learned the calcification and cystic process in our children's brain stopped too. And it was because of the heroic efforts of Laura Atkins fighting for her son's life, Wyatt, where we were able to leverage that to get that treatment for our children too. Now, the journey doesn't end there because we were still seeing a breakdown in cognitive decline and motor skill function. So,

We ended up going the path and this is unfortunately after Ethan passed on, which we'll get to, but we were able to get stem cells as a treatment for my child. We had to go to Cabo for the first treatment, but now there's there because of legislation being passed in Florida, there's an avenue for us to be able to drive 30 minutes to get the same treatment for our kid here. Now this is where I'm going get a little technical because I think this is important for your viewers, specifically for your viewers that are battling a rare disease where there's cellular dysfunction. Stem cells.

is taking stem cells from a healthy outside source. Their power is once they're put into your body, they could differentiate, meaning they could turn into any different cell in your body. It could become a bone cell, it could become a muscle cell, it could become an endothelial cell. The system that leads to those bad blood vessels. So as the stem cells go in the body, it recreates and adds health to that system. And another thing that the endothelial cells do other than the angiogenesis, the creation of those blood vessels, is that it creates and maintains the brain blood barrier.

And under different endothelial diseases, we've learned that there's a collapse of that brain blood barrier. And when that collapse happens, it leads to a leukodystrophy. So getting these stem cell treatments, we have seen an immediate positive impact on Liam. All right? Now, we need to have more access in this country, and we're going to get into the call to action at the end of this. But this is very much going to be a part of it. OK? Also, in our fight for Liam,

Thank goodness for ChatGPT because it does streamline some things. also with the working knowledge that I had, I was able to utilize that tool, upload my child's mutations, get an understanding of what those mutations were, lay that against other gene therapies taking place already around the world based on different studies, and I found a treatment for my son too. About two weeks ago, I put something on Facebook and I said, you know what? I got the answer. I just need somebody to say yes.

Now, as an attorney, when people approach me, I don't like people saying, hey, Bryan, I got this problem. Figure it out. I like when people come to me with a little bit more information and design. So with this thought process, said, hmm, what's going to differentiate our child's cause with the other people sending emails? Because there's a lot. Matter of fact, two weeks ago, there was a specific gene therapy that was performed for a child at a children's hospital in Philadelphia. So now this is becoming very much exploding these types of hopes.

for families like ours. So what I did was I constructed an email which got very technical where a geneticist could read it and understand what's going on. It's just not saying, hey, I got this problem, help me out. It's saying, hey, here's the problem. These are the mutations. These are the type of mutations. These are gene therapies that are applicable to solving this. Here are the studies where I'm getting this information from. Take a look at it and tell me if this makes sense. About, what are we, Tuesday? About five days ago.

No, no, a week ago, I received an email. Because I was blasting these emails out to everyone.

It said, Mr. Docobo, your email is forwarded to me. I think we should talk. And it was the top gene scientist at a university in Miami. And five days ago, I had that call with him.

We talked about it, he said, he looked at it, goes, you wrote this? And I was like, yeah, he's like, there's geneticists that can't write it. I was like, it's me, myself, and chat GPT. I had to tell the chat GPT part. But, you know, why not? He says, this makes sense. You're onto something. He had other ideas of different gene therapies when we spoke about it. But we have somebody that's onboarded that we might be able to save William's life. Okay? Now I think there is a lot of work, and we're gonna get to the call to action later on, okay? Where this is all gonna,

gonna make sense because there's a call to action for families like ours that are going through this and we need that support. I think that also what needs to be discussed here is that where disease affects 7 % of the population, I don't have a rare disease, my wife doesn't have rare disease, but she's a mother, I'm a father, it affects us too. And it affects my parents and it affects my sisters and it affects everybody in our orbit that is going through, walking this path too.

We are now reaching a place in science where we see these as being different diseases. It's more about the technology to cure these diseases. We might be on the precipice of getting things done, but now it needs to be organized. It needs to be streamlined. We need to have a way for insurance to be able to cover these things and these treatments with the stem cells. Because even if we cure my kid's disease today, we need to rebuild his functions that have been lost by the use of stem cells and other rejuvenative measures. So the thing is this.

Our decision as a family, when we were going through this grieving process, and we're still grieving, and the loss of Ethan is profound, which we're gonna get more into. But I'm telling you, any family out there going through this, it's one day at a time, it's one step at a time, but you gotta keep moving forward because you never know where you're gonna get. When we got that diagnosis and we were crushed and scared and terrified,

and everything we built through our entire life looked like it was on the precipice of crumbling. We didn't choose this path, it chose us, but what do you do with it? And our communities need to have strength in people around us to lift us up, to just nudge us forward just a little bit, because if all the families start taking the steps, better the families took, to get to a path, if we all collectively do this in our mission, we could get somewhere that is profound and change the world.

And now we live in a time where this is feasible. This isn't just motivational talk. We have AI, we have gene therapies, we have different things now that make this tangible and real. We could get there. But I think that there needs to be more organization and more streamlined way of getting these done for our families. And that's something I'm very passionate about. And so some of the projects that I'm involved in personally.

And as we develop these, we want to share it with the world because we feel like...

I'm take a step back to go forward. I know I'm talking a lot here, but I know my wife, when she needs help, held up.

time go ahead.

There was, when we were going through this grieving process, grief is handled in different ways by different people. The way I dealt with this grief is, if I'm sitting idly, I'm gonna break down. But if I get to work and take action, it's a way of me dealing with that grief. My wife's way of dealing with it was she delved into a very deep spirituality.

And I can't tell you how much that has brought to my life in our experience. When she's getting into a deeper understanding of herself and souls and things that are discussed by Eckhart Tolle and the other gurus out there, which were religions, I think there's a lot of overlap. And when you peel away the veneer of the institution and you come to a returning of the soul and where we're from,

I think that's something that needs to be more broadly understood. And at a point in time, I realized in my journey.

I don't think this happened to us by accident. I believe we were chosen. And I believe that we had to walk the fire to become who we are today. And in that becoming, I believe there's a broader blueprint of the responsibilities that we have to change the world.

It's gonna happen to anybody. It happened to a pediatric nurse. I'm not a doctor, but I know how to talk to people. I know how to organize. And in grief, it's the becoming. You know, it's the idea of spring. Is spring about the flowers or the change we bring to the world? Or is spring about the struggle it takes to crack that seed open and grow? And the cracking.

of the soul never would have happened if it wasn't for the profound grief and loss that we've experienced, that we're going through, and that we're walking. And the question is, is what do we do with What do we do with it? And I said this before the podcast, and I'm going say it again here for your viewers. You and I have known each other not from the purview of grief. We've known each other before, and the grief came to us. I've been watching you. I've been following your story.

And while it's not my place to say, I'm not your father, I'm not your, man, I am proud of you. Because the thing is, is that you took the path of saying, how could I turn this great pain and turn it into something beautiful? You are spring. You are the cracking, you are that growth. And what we're seeing here on this podcast, these are the flowers that are blooming. And I said this before, but I want to say thank you in this moment for providing this.

got to thank you as well. I fully receive your words and I'm very grateful for everything you shared and I see you. I see you both. I see you answering the question, now what, to the best of your ability and you're choosing to give the meaning that you want for the full life of your son, Liam, and Ethan as well, and yourself in extension to that.

helping other people who may come after you in this experience. And I want to, first of all, thank you again for your willingness to be vulnerable and your willingness to be open and authentic. I want to also back up a little bit because you touched on so much that I do want to address. And specifically, I want to acknowledge that this is a mother and father's love for their child.

that resulted in finding all of these answers that perhaps, like you said, had this been somebody else, maybe you wouldn't have these answers because yes, it was 2012, but the answers are coming now, unfortunately, and unfortunately at the same time. So what you're doing, it feels heroic. It sounds heroic when I hear it. And hopefully that call that you received five days ago from

the specialists at the University of Miami, I pray and I give it all my positive energy so that we can find the answers that are needed, the missing pieces. And it also sounds like the solution wouldn't just help Coats Plus Syndrome. It sounds like the solution would help many rare diseases. But before we go there, Danielle, if you're up to it, if not, that's also very okay. I respect.

you know, where you are right now and what you're feeling. This is a lot. This is intense. But you currently work in the pediatric department at Joe DiMaggio. When you received the news, did you understand what was happening and to what degree? And perhaps share a little bit about your side of the story as well.

Yeah, anything that says, leukodystrophy is not good. I've seen kids with all types of, chromosomal disorders, genetic disorders, rare life-shortening disorders, traumatic, you know, issues, but as soon as I saw leukodystrophy, I mean, it was just, like a shot to the heart.

That's something you typically don't survive. I've seen other kids at the hospital with different types of leukodystrophy. And most of them are in some sort of vegetative state. Some of them are older. Their teens are early 20s. A lot of kids don't even make it past two, three, four, five years old that have a lot of these neurodegenerative disorders.

So in one sense, Liam is doing great. mean, he's eight, has friends, swims, know, plays with stuffed animals all day, wrestling. Like, he's very verbal and interactive and lovable and sweet. And he's doing pretty well considering having a horrible diagnosis. But then on the other hand, I mean...

I take videos of everything. And I can see even from a year or two ago, he used to be able to sort of write his name a little sloppily. But I just looked at a video the other day and he can't do that anymore. He doesn't draw pictures. He doesn't enjoy arts and crafts like a lot of kids because he has a tremor in his left hand with fine motor activities. He can't play soccer or baseball like he used to.

I see how slowly it creeps in to where you almost miss it, unless you're looking for those fine details. And you can't help but go to a place where you wonder what another 10 years is going to look like. And it's like today I'm extra emotional, it's June and this is the month Ethan died. June 30th, I think that has something to do with it.

You know, you can't live there. You can't stay in the state of grief and despair all day, every day. It will really consume you and kill you, I think. So I give myself time when it hits. I let it hit. You know, I don't try to push it away because then it builds and builds and builds. This is kind of what happened. But, you know, when it first happened, I read.

.

read a lot of books and a lot of spiritual podcasts. those are actually podcasts who are tremendous resources, people that have been through it. And there are a few that I really honed in on. And some of one of them said, I can't remember her name. I tried finding it and I just can't remember what I'm searching or what name to search for. It's someone in Australia. And she's, when she lost her son,

she got very curious about like where does this grief come from? What makes it so much deeper and heavier than losing a parent or losing a dog or losing maybe a spouse? I know it's so cliché to say, but like she leaned into it and she got really curious about the dark side and where it can take you and what...

powers it has to move you into better states of being than where you're at now. Because where we're at now, or in this exact moment, like I'm incapacitated, but tomorrow, my heart will soften again, it will open, and I can move through it and then be more present with Liam. And through that, I make better choices for him.

try to find activities he can do with other kids. Takes a lot of effort and the special needs community to find community and kids that are on the same level as him. But I become a better person when I really let it take over me in a sense so that it can move through me. Otherwise, it's for naught. What is the point of this?

And then we can focus that energy into the Coats Plus Foundation and writing that I do and a documentary that someone wanted to potentially make on the family.

We've, this has been an evolution of the soul, just flat out. And I just wanna take the moment to just say.

The evolution in a very difficult time that I've seen of to where she's evolved has been touching. I'm an attorney. I'm okay speaking in front of people. And while I have a story from the masculine perspective or the male perspective about how to handle these situations and be the strength.

There's an equal, even more compelling story that needs to be told from the feminine, from the mother's perspective. There are children that grew inside of her, that mother's love, that's something that as much as I love my kids, I'd be remiss to say there's nothing stronger than a mother's love. And recently, Danielle's been stepping into her voice. She was invited to speak at Joe DiMaggio's Children's Hospital and she crushed it. She did a great job. We had an opportunity to be on the radio and

She was able to speak about the experience and that she's here today. And it's important because vulnerability provides space. It provides permission for other people to know they're not alone, to grieve, take radical acceptance of yourself and what you're going through and that we are called to share our story with the world as you are. And this is a very

necessary platform that collectively we're all stepping into. Ethan passed just about a year ago, June 30th, 2024.

Yeah, duh.

I feel that he is guiding us. He hasn't left us. I feel that there's more going on with him than we even see in the flesh. Now, that flesh, that child, the smell, his hair, his giggle, his arms wrapped around me.

I missed that show. Deep.

deeply. But also I take comfort.

that there's something that encompasses that body, whether it's outside of it, inside of it, that spiritual sense, that this all had to happen. There's a reason for this and that that soul is guiding us to where we need to be. And with that soul guiding us, we may be able to save his big brother.

Being in the situation, it leads to all types of things you don't really think about until it happens, or it's about to happen. But you know, Liam asks about his little brother. He's grieving too. And thank God he doesn't know he's sick too. And I'm dreading the day that we ever have that conversation.

And you know what? On the other side, I hope we do. Because if we have that conversation, it means he's doing all right. And he understands it. And maybe we save him. And we can say, you know, yeah, it sucks. But you're here today because of the action that we decided to take. Maybe it's not us. Maybe it's something living through us. But the decisions that we tried to take. But.

You know, it's difficult. know, we watch Lion King.

And it hit me that it's constantly on his mind because when Mufasa dies, Liam's happy. He's happy because now Mufasa could be with Ethan.

And it leads to whole other question about how is this affecting him losing his little brother? Does he pick up on the fact that he may not be okay to?

We're just trying to create the happiest environment for him we can. And we're trying the best we can. And it does seem insurmountable at times. But you can't, you have to focus on what you can control. There's stuff you can control, there's stuff you can't. And just if you could do the best you can in that space, you might get there.

Ethan, when he was here, it was a lot of work, Buzzing of that machine, I don't miss. He had a G2.

And we define P-packs for him to play. We're trying to care for these two special needs kids while you're battling the disease, while you're trying to find a cure. And by the way, you gotta put a roof over your head.

But I'll say this, is that I would, as much work as it was, I would do that every day for the rest of my life if he was still here. But again, I know he is. His flesh may not be here, but his essence, his spirit, that matter that is now energy, is here to guide us. And I think that there's a lot of comfort with that. Into what Daniel was saying is,

You could visit the pain, but you can't live there. You can't live there. And sometimes we have to remind ourselves of that too.

Thank you both for sharing that truth and that reality. I say grief is not this or that, it's this and that. It's living the both and of life where multiple things are true at once. One part that just touched me to my core was when you said, know, I was going to ask you about how Liam's doing and his understanding of what just happened and where his brother is and does he understand about his own condition and what that means for his life to obviously to at an age appropriate level.

When you mentioned The Lion King, that was my favorite movie with my brother. So when you said that, I was like, wow, just those little things, it's a little things that just pull at the heartstrings the most sometimes when he said, oh, good, now he gets to be with Ethan. You know, I got chills because it's him understanding to some degree what's happened. And I also hear that he understands a bit of the continuity of life after life and perhaps the reunion aspect of it, which

is bittersweet and also beautiful. It's the both and of things. I also hear that you can't stay there. We have our daily lives to function. We do feel our grief. Danielle, I heard you say that you lean into your grief. I heard you both say that, that you both lean into your grief, and that is the way through. I completely agree with that, that avoiding and pretending like this isn't happening is not helpful. If anything, it adds layers to the suffering.

but you're so brave and I use that word lightly, but I see you, I see your pain and I see what you're doing just to put one foot in front of the other every single day as best as you can and give your son Liam the best life possible. As far as the foundation, what is your mission with the foundation? I know you have four pillars that you perhaps can address and...

I hear the story, you I know you personally, but I feel like if somebody's listening or watching and you could just on a human level relate to the loss, the pain, the hope, the struggle, the wish for the best outcome possible, how can we help? The floor is yours to share however you like.

Great question, happy to answer. And to help the, I'm gonna speak to a few things here. How to help our specific cause and then how to help the general rare disease community. Specifically for our cause, we do have four pillars or four streams, if you will. The first is fundraising. We need to have capital to run the rest of our operation.

So if you're interested in donating to the Coats Plus Foundation in our cause, if you go to CoatsPlusFoundation.com, there's a donation tab. More than happy to take donations that way. Or you can reach me at Bryan at CoatsPlusFoundation.com. If you want to pay more direct or have any other ways to help, that's obviously the first pillar and very important. The second pillar is awareness. It's a very newly understood disease. Matter of fact, when it pops up on an MRI, it could be

easily misdiagnosed as some sort of infectious disease of the remnants thereof. The eye conditions that manifest, it could be seen as some sort of variation of retinopathy of prematurity. So we need to educate NICU teams, doctors and nurses, as well as ophthalmologists on the pediatric front, because on the first lines to be able to identify this disease and the early identification.

leads to earlier intervention, which leads to better outcomes for these children. So that's something that we're looking to do as well. Now again, in order to bring about that awareness, we need to have funds. Myself, Dr. Royo, who's the head of our medical team within the foundation as well, we need to start circulating within Nord and these other institutions to bring about this awareness. There's a whole process here. The next pillar is research, okay? Research, obviously, that is the ultimate level that we're on.

And we need to have funding to be able to fund that research. Now, because I'm fighting for my kid's life, really that research arm is kind of myself, just pushing it forward, pushing it forward, but we're finding other allies within that realm. So if there's any other type of gene doctors out there or a connection with a geneticist that has similar passions, if you want to reach me at Bryan at coatsplusfoundation.com, and that's with a Y, B-R-Y-A-N. We'd love to have any conversation if you feel like you're in the space to help.

And just like the old saying goes, everyone's worth a cup of coffee. You never know what you're gonna learn from somebody. You never know what it's gonna lead to. And then the fourth pillar is about giving back to these families. We consider ourselves as awful as the situation is to be blessed in the sense that we have support from a family. We have support from each other. I have a career where I have a little more flexibility so I could do other things. I couldn't imagine a single mother going through this, okay? Or somebody else.

We're very mindful of how can we give resources to families that are going through the battle with this specific condition. We are also on the forefront of interconnecting more of that community, not just finding numbers, but providing value and updates with them. So that's something we're working on as well. And that's the fourth pillar is that community get back. So that's specifically how to help the Coats Plus Foundation. We'll take a moment to promote. We have a huge, fun golf tournament coming up.

And Coral Springs, it's at the Country Club of Coral Springs. It's taking place on June 13th. That is the Friday before Father's Day. It's a sentimental date because that is the day before my birthday and also my dad's birthday, because I was born on his 34th birthday. And on a, know, Saturday side is the anniversary of when we placed Ethan on hospice. And, um, and we feel it's appropriate to do it in his name.

to raise funds to fund the apparatus of everything I just discussed. So if anybody's interested in that, feel free to reach out. I'm also blasting on Facebook, and I think it's going to be shared through the podcast about how to sign up. We are taking sponsors through the end of this Friday, because we have to produce the merchandise for those sponsors. But it's going to be fun event. We're also, later on this year, going to have a charity poker tournament. So that's going to be fun too. So not everything has to be said.

Why don't we get to come together and have a good time while we're raising money for a great cause? So that's our thought process. Now, how to help the overarching mission of the rare disease community and families. All right, this is important. If you are so called or you're going through a rare disease battle of your own, I'm in the process of working with other people to create a platform.

where families don't have to go through what we went through. Okay, when we got the diagnosis, it was like we were dropped on another planet with no map. We had to figure out that map and discover it and interconnect. And while there's some great resources out there, we also have to be mindful of the families that are caring for that rare disease child or family member need to be cared for too. Provided guidance, how to keep a marriage together, how to keep family together.

There's a lot that goes on with us, how to keep the roof overhead without losing it. And we are, very mindful of resources needed for that component too. There's a lot of wonderful organizations out there that are laser focused on the immediate needs of the individual that carries the disease, which is profoundly important, probably the most important thing. But we also can't lose sight of the caregivers in that individual's life. And also the advocates that those caregivers need to become.

depending on that set of circumstances and how do we support and how do we bring together those communities. So if anybody has any ideas out there about how they want to connect on that regard, feel free to reach me on that too. Again, Bryan with a Y at CoatsPlusFoundation.com. I'd love to hear from you.

Thank you, Bryan. And to clarify for our listeners, because this podcast reaches all over the world, so we're talking about the event on June 13th is going to be taking place in South Florida. But if you are listening and you're not in South Florida and the story resonates in any way, or you have some resources, or you say, hey, I know somebody that may be able to help by all means, please reach out. I'm going to post Bryan and Danielle's foundation information and contact information in the show notes.

please, please, please reach out. At the end of the day, I think it's very clear that time is of the essence and every little bit helps, whether it's financially, research, supporting the community, awareness, any of the pillars, and just helping people get through this thing called life that sometimes life's a little too hard for our liking. I also want to acknowledge how much June carries for you both and for your family. It's celebrations and it's the...

you know, first, my goodness, first anniversary of Ethan's passing and, and, and, you know, in life, it just keeps going. So in a way, I'm honored to be able to release this episode in June in honor of Ethan, in honor of Liam, in honor of yourselves and the families facing this reality. Because like you said, the person affected is the center of the concentric circle, but it expands from there on out to, you know, family, family members, community, and so on and so forth. We hear you, we see you, and we thank you for what you're doing.

Is there something you would like to share with the audience that I haven't touched on? Is there something, it could be personal, it could be about marriage, spirituality, your son, your wishes, anything that feels important to add to the conversation?

Thank you. I'd say I think you may have touched on it and you're the first person that I've ever heard say it about it not being... I can't remember exactly who said, but the point is you can still enjoy life and engage in it and have fun and still be grieving and in despair sometimes, but it's... It doesn't have to be your whole framework of how your entire life is.

It can be both at the same time. And I wish someone had given me permission to have that. Because I thought once you lose a child, that's it. It's kind of like hearing mourning the rest of your life. But it doesn't have to be like that. It can still be deep and beautiful and enjoyable. So if anyone needs to hear that, I give you permission for that.

Thank you, Danielle. What is something on that note, what is something that was helpful to you personally and to you both during the loss of Ethan and throughout this whole process? What's something that's been particularly helpful, whether it's something somebody did said or the way in which they showed up?

I'm gonna take this one.

I have grit, I'm pretty tough, but with certain relationships in my life aren't where they should be, I begin to fracture. And there was a point in this journey where I found myself fracturing. And there's two things that I did. Is I did start going back to church and I found a wonderful church. And while I have my own thoughts, I feel like if you find a healthy church,

where you walk out where there's wind in your sails or any other type of religious place, that's fine. Not the dogma, don't do this, but I'm talking about wind in your sails and motivation. Whether you ascribe to the complete doctrine or not, but if you have those feelings, there's a place for you, find it. I would say this, you need to connect to a community because the second thing I did was this, and this is something very near and dear to my heart as well.

I had a close friend, by chance we ran into each other. He was watching my story. Likewise, he had a situation where his sister passed during childbirth and he was stepping up to the plate for the needs of that child that doesn't know their mother. We had a tremendous amount of respect for each other and by happenstance we go eat breakfast somewhere, a place we never go to. I see him in this courtyard, he's never there. And we cross paths. And it's almost the question is this

Coincidence are there really coincidences sometimes, know, get ask yourself that and he said Bryan I Have this men's group that's coming to Broward, know, you know and and we're starting this and we built communities in college together And he said I need you let's let's do this and we did and those seeds and being in a space because women have a way of connecting that I think that men kind of struggle with My role here in this endeavor is different than

than Daniel's, okay? Just different. But as men, we have to be the rock. We have to be the solid one that everyone can rely upon when this going gets tough. And let me tell you, it's not easy. And finding a space for men, we have monthly meetings where 20 guys do a chapter, because now we have chapters, because now it's just flourishing, quite frankly, this concept, where men get into a room, we have a topic we discuss each month, and there's unlocking in the vulnerability.

where we realize that we're all going through it. And we talk about business, we talk about spirituality, we talk about relationships, we talk about the fires that we are walking. And that group is called Gentleman's Tribe. Gentleman's Tribe is where many chapters are spring up in South Florida area, but they're also coming to other cities as we see there's unlocking happening elsewhere. Matter of fact, there's a podcaster coming out to interview me sometime in July that's very interested in the concept.

and may be interested in even having chapters in Utah. And we see this as something nationally that we could help. Because right now we have a men's mental health crisis in this country. There's a healthy way to approach this, and there's an unhealthy way to approach this. And I think there's other people out there that I think you know what I'm talking about. This perception of what masculinity is or manipulation, masculinity needs to be grounded, it needs to be emotionally intelligent, it needs to be leaders.

and it has to be more cerebral than some guy in the parking lot trying to pick a fight. That's not what masculinity is. So what got me through this was the support of those brothers that I had during that time. And quite frankly, I don't know if I would have got through it. But I'm here today because of the support that I received from those men. Now, it's called Gentleman's Tribe for a reason. There was a time of the way people did life was much different.

We had more community, more interconnectivity. Now we are in suburbia and we have concrete that has walled off this connection, just the design of it. So how do we return, how do we remember and get back to where we were in that tribal sense of community? That you're not in this alone. And platforms like this are wonderful and great. And then the next step is how can we do more to bridge those gaps and be a bridge to that connective world?

And that's why I feel passionately about it. We actually have a radio show now. It's also on podcast. It's called The Gentleman's Tribe Show. We just launched this, you know, so we're doing the best we can. It's my first rodeo being a host. But I think for launching, I think we did all right, you know? But again, this is, I believe.

the fire I had to walk in the becoming of who I am now for this greater cause. And I think that everyone that's walking the path of grief, which you're quite a, why would I call it lucky? I would say it's unique if you don't walk a path of grief. But I feel if you find a way to transmute that grief into something beautiful, the day will come where you're gonna look back in life and you're gonna say, I felt like the universe was working against me.

but is working for me all along. And the people that we lost, those souls made the greatest sacrifice. And this is all pre-designed in our becoming of who we are and what we're supposed to provide to the world. It will all make sense one day.

Immunity is key and grief certainly cracks us open and when you lean into it, it realigns us with our true purpose. If that thought serves you, because I also believe we don't always have to make meaning of everything if we choose not to or if we're not ready. If you do, it opens doors you never thought were possible. It opens connections that you never thought were possible, much like what you said about your tribe.

which is a very important and much needed space. I do have people that reach out and men say, there are no spaces for us. So I'm more than happy that one, that's wonderful that you created it and I'm happy to share the information in the show notes as well. So if you're listening or watching, be sure to click on those links and access these spaces.

And going forward, if there are men that are reaching out to you with those feelings and connectivity, I would love to talk to them. So if you have people that have interest, I believe it's part of my calling to gather that community. People need to realize they're not alone. Men need to realize they're not alone. Mothers need to realize they are not alone.

And I just want to do my part in that endeavor. So if you do have men out there that have interest in that, I would love to keep an open line of communication between us to maybe there's something where I could help those men and bring them into the tribe.

Absolutely. So if you're listening and that resonates, reach out to Bryan and Danielle if there is anything that's in your heart to share about what was helpful to you, what is helpful to you in your grief, the floor is yours. Yeah.

Yeah, no. So like Bryan had mentioned earlier, I went down this path of spirituality real deep, real hard, because nothing else really resonated. So I started reading the books and I started listening to a podcast called Next Level Soul. And then just kind of, the doors opened from there and

That was one of them, Michael Singer's The Untethered Soul. We hear this all the time now, it's very mainstream, but even like 10, 15 years ago when I first read this book, it wasn't to be the observer of your thoughts, to listen to the incessant chatter that goes on in your mind that is so negative and destructive and to catch it in the very beginning stages before, I'm reading the chapter about your heart closing.

and how that's the energy center of us. And if you can catch it as it's closing, you can release it and expand it and let the energy flow so much. And it makes your life so much better. Instead of becoming this hardened, walled off person. I see how people could go down the drinking and drugging route. I know how people isolate. I used to be excellent at that. I've been depressed more times in my life than I can count.

And you would think this would really take the cake on depression, right? But surprisingly, 90 % of the time I'm not. I work part-time, I take care of my son. I have lots of friends, I do yoga, I dance, I do stuff. And I owe a lot of it to the spiritual aspect. And the more I go, the more I wanna keep going and learn about, don't know if, I'm sure a lot of your listeners have heard of...

soul contracts and pre-birth blueprints. And I know people know about mediumship and people have a lot of metaphysical experiences that now is talked about. I thought everyone sort of talked about this because it's all I listen to, but it's not as mainstream as I thought. And I hope people talk about that more. And we've had people that have come into our lives that have...

physically seen Ethan or gotten messages from him. I've had four people that have had dreams about him and then relay them to me and that it just, it's the best because I haven't had them myself. I get signs all the time and but I ask for them constantly and I take them when I see them. I don't second-guess them and I hope that like through sharing a conversation like this people aren't so afraid just to

Thanks.

share an experience or a story about it, because it makes what we've gone through so much easier and so much more deeper. Like there's so many layers to being a human. I that's a conversation for another time, but we chose to incarnate at this time, at this moment, where Chat GPT is available.

where gene therapy and gene editing and CRISPR and Cas9 is a real thing and it's actually saving lives and we wanted to be witnesses to this. So we're here and we're doing the best we can with it.

That's right.

I love that, I say to people who are sometimes skeptical because this information is new to us, signs and dreams and all these things, if it's helpful to you, if it felt like a point of connection with your person and your loved one, if it gave you peace of any kind or some hope, don't question it. Just...

Lean into that and say thank you. I may not understand the inner workings or outer workings or any workings of how this all works. It doesn't matter. Did it feel like a point of connection and hope and love? I think in my opinion that's good enough. And so I thank you very much for sharing that point. That's very beautiful.

And it's, it's, and again, like me, attorney-based, skeptic, very much grounded. And I feel that the whispers that came around me by and through my wife has had a profound impact on me. And I think that there's a point in time when you start understanding the universe and how it works, that point of surrender and saying, I'm being pulled in this direction. Don't resist it. Don't overthink it. This is my inward.

being of who I am, being outwardly reflected and just just go with it. And and the universe knows and just let it pull you and let it go. And I think that once you once you're able to do that, I mean, I'm in a space where you know, I think we're in a space where it's just the whole universe is coming to us now. And it's in large part because of the cracking, the breaking, and the surrender, and just letting it take us. And that's

That's where this grief and this evolution of soul has brought myself and my wife.

That's beautiful. And I hear it in your story and I'm seeing it now. You both compliment each other very well in this process. In a way, it's almost like the team that needed to come together for this life experience. And I think you understand that. I think you both understand that on a very deep level, it sounds like. And you're doing so much for the community. You're doing so much for yourselves and for your son. Even with what you've done to date, the world is better off with everything you've contributed. And I just know this is just the beginning. So.

Thank you both for what you're doing. We're getting to the end here and I want to close with a couple of thoughts. The first one is, what would you want the world to know about Ethan or how would you like him remembered?

I wish people would know that even someone who can't verbally talk or walk and needs a G-tube to eat, there's still a tremendous amount of quality of life that special needs kids have. Even as a nurse, I didn't fully see that till I had Ethan. I thought they took up a lot of resources for

small amount of, it sounds so bad to say, a small amount of payoff in the long run. But I, you know, I feel horribly guilty thinking that now. But there's a lot that they share with the world for the small communities around them, for the staff when they go to schools. Like they affect other people in other ways and there's this huge ripple effect that I only am still learning now from.

teachers that he used to have and people that took care of them and my in-laws and my own parents. We weren't familiar with the special needs community really, but there's so much quality of life that they have and joy that they give without asking for anything in return. It is a labor of love. There's no way around that. Anyone that has a special needs kid or any kid knows that, but they're here to advance our souls.

and to spread joy and to uplift. And I didn't understand that till I had my own.

I think the thing I want people to know about Ethan is that he was a teacher. Presence.

all the things that affected us about the shifting of our expectations. Those were our dreams. Those were our desires.

Ethan's experience was he was not thinking about crushing school or what job he wanted or what career path. He was joy.

embodied. He lived in the moment. He exuded love. And I think that that is a lesson for everyone else.

Beautiful. And we honor Ethan through this podcast episode, this heartfelt, vulnerable and very open story and everything you've shared so far. So thank you very much for that. Final question. What would Bryan and Danielle say to Bryan and Danielle after the loss of Ethan?

To take it real slow. That some days are gonna be fine. And other days it's gonna hit you all over again like it just happened. And there's no straight path. Ending up to honor it every day, moment by moment, hour by hour sometimes. Especially on anniversaries or important dates.

There's no right way to do it. You can't really learn to love yourself. Learn self-compassion. To be very kind to yourself through it.

you

It's almost been a year, just so much has happened in that year. In a spiritual sense and other things and messages and actions that we've taken.

When you ask the question, does.

Bring me to the deck.

It's raining.

They came to pick him up while I'm in I was in bed with him in hospital seems at home And I was

by the hospice nurse. Ethan was lying next to me. She just said, I'm sorry.

And I think if I could go back.

Well, they picked him up then.

Took his body outside.

put in this car.

We watched the drive away while the rain's coming down on us.

the feeling of our lives whenever we say it.

And if I could go back to that day, then I could talk to that Bryan.

I would just tell them to be patient, to be present.

and that the universe has plans and this will all make sense one day.

But one day at a time, one step at a time, Bryan, keep moving forward. That's what I would tell.

Bryan, Danielle, thank you. Thank you for being here today, for your generosity of time, for sharing your story, for your bravery and all you're doing. May this episode reach the right people at the right time. And if you're listening, I'm sure you've cried a few times here with us today. And if you have some answers, please, please, please call to action is to reach out. Thank you both for being here today and thank you for being you.

Thank you. Thank you, Nina.

That's it for today's episode. Be sure to subscribe to the Grief and Light podcast. I'd also love to connect with you and hear your thoughts and your stories. Feel free to share them with me via my Instagram page at griefandlight, or you can also visit griefandlight.com for more information and updates. Thank you so much for being here, for being you, and always remember, you are not alone.


People on this episode

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Nina Rodriguez

Host
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Bryan & Danielle Docobo

Guest