243 – Christian Paddock of Seattle, WA Reflects On The Loss Of His Daughter Who Had STXBP1, A Rare Neurological Disease

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad To Dad Podcast working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.

Christian Paddock: And it was very, again, it was one of those sobering moments. It was one of those things I just remember very clearly hearing this news that I just, I think maybe we expected something, but not like that. Not to the extent of your child is one of 300 people we’ve identified in the whole wide world and we don’t know what to tell you next. And oh, hey, the best place you’re gonna find information is probably Facebook. You’re gonna go join a Facebook group and you’re gonna join a group of parents who you’re gonna find are actually gonna have the best information and the best advice.

Tom Couch: That’s our guest this week, Christian Paddock, a corporate trainer for Audi of America. Christian and his wife Megan, have two girls, Addison and Hazel.

Hazel was diagnosed with a very rare disease, STXBP1, and sadly passed away at age six in 2021. We will hear Hazel’s story and how Christian and Megan dealt with this horrible tragedy. That’s on this week’s Special Fathers Network Dad To Dad Podcast. Say hello now to our host, David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad To Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com, groups, and search “dad to dad”.

Tom Couch: So now let’s hear this conversation between David Hirsch and Christian Paddock.

David Hirsch: I’m thrilled to be talking today with Christian Paddock of Seattle, Washington, who works as a corporate trainer for Audi of America and is the father of two. Christian, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Christian Paddock: Thank you, David. I appreciate

David Hirsch: you.

You and your wife Megan, have been married for 10 years and are the proud parents of two girls, Addison five and older daughter Hazel, who very sadly passed away at age six in July, 2021. While she was diagnosed with STXBP1, a rare neurological disease, she actually died of a fluke accident.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Christian Paddock: I grew up in Columbus, Ohio of all places. I’m 45 years old. Lived in Columbus for the first 20 years of my life. I went to an all boys prep school in Columbus. I was an only child from a single parent home, so it was mostly my mom and myself and my maternal grandparents. I enjoyed growing up in the Midwest. I enjoyed Columbus and I enjoyed Ohio. But when I was 19 years old, I ventured to Seattle on a ski trip and fell in love with what is, I think still one of the most beautiful places in the country. Just fell in love. 25 years later, I have now lived my entire adult life in Seattle.

I’ve been very fortunate to find a career that I enjoy and find rewarding, but also to have had two beautiful girls and a beautiful wife. I feel very fortunate. When I was younger I did not have a big family and I really always just wanted my own family, and I’m very happy and proud to say that I was able to do that.

David Hirsch: Excellent. I want to go back a little. You didn’t have much contact with your dad. That’s what I recall, but I’m curious to know what did your dad do for a living?

Christian Paddock: My dad was an attorney. He was actually a magistrate. He would’ve been at one point in time, a non-elected judge, basically. And then he moved into a a practice where he opened his own mediation practice. So he was basically an attorney in different forms and then moved into Korean mediation.

David Hirsch: Great. So how would you characterize or describe your relationship with your dad?

Christian Paddock: It was tough. He wasn’t very present after my fifth birthday. I remember seeing him on my fifth birthday, and then I didn’t see him for about 12 years and he did not live but 15 minutes away. I remember my fifth birthday, I got a baseball glove and I had that baseball glove for a very long time. I don’t know where it is now, but I I literally held onto it because it was this one thing that I remember from my dad and he just wasn’t present.

He wasn’t around when I was young and I remember like when I did visit his house, I remember in the summer in Ohio, like he just left me out at the pool and I got very badly sunburned. Just like very badly. Those are the things I remember. I don’t remember. I don’t ever remember playing catch. I don’t remember. I remember I don’t remember doing the things that I like to do with my kids now. I don’t remember any of those things. I just remember strife and basically absence. I remember him sending back $10 insurance copays which he was ordered to pay, but he would send them back just to be difficult, to be challenging.

And I remember how that affected my mom. I remember how bitter and like how angry it made her. And yeah. And then I didn’t see him until I was in high school when I was subpoenaed to go to court because he wasn’t paying child support and he hadn’t seen me since my fifth birthday. And he wasn’t expecting… I was playing football at the time. I was in great shape and he wasn’t expecting a guy who was a couple inches taller than him, and it really surprised him. I saw the look on his face. He had walked into a side room next to this courtroom, and he was peeking out the door. I remember him looking through this crack in the door because my mom was sitting down in this, in front of this courtroom and I was standing up and I remember turning and looking at him, and I saw the recognition in his eye. It was pretty wild, the look on his face. He slammed the door. He closed the door really abruptly. I It really surprised him.

He even stopped me that day as we were leaving. He stopped me on the way as we were getting in the elevator after he was ordered to pay all the things that he owed and back medical bills and child support. He followed us to the elevator and stuck his arm in the elevator as we were leaving. And there were other people on this elevator and he said know, your grandfather’s had some heart problems lately and if, uh, if you can, you might wanna talk to your doctor about it, you might wanna, you might wanna bring that up.

And I said I would if you would pay the bills. And that was the last time I saw him. I didn’t see him until a few years later when my my paternal grandmother died. And I didn’t even get a phone call. I had a, an aunt that read about her death in the obituary in the Cleveland Plain Dealer and called my grandma and said to, does Christian know that his grandmother died? And I had no idea.

That was what I remember. I remember him being very absent and It’s tough. It was tough. And I, the school that I went to, which is very different now, many years later, I was the first child from a single parent home. There’s only about 650 kids in that school and they published a directory with names. And when I started I was the only kid from a single parent home. And it was a thing. It was a thing because I remember. I remember many years later when people’s parents were getting divorced in middle school. I remember my close friends calling me crying, sobbing. People I’ve known literally since first grade, first through 12th grade, I’ve known these guys, and I’m, I don’t remember having a dad. I didn’t miss my dad. And I remember them just, they were just so distraught and I just kept on, I was like, it’s gonna be, it’s gonna be fine. I didn’t know that it was gonna be fine, but I didn’t know anything else. I didn’t know anything else. But I remember that being very much a stigma thing. I remember very much being a thing that I felt different. I felt I was bused in from the wrong side of town and it was just, it was different.

David Hirsch: Yeah. Thank you for sharing. I can feel your pain as you describe or recall your childhood and your growing up, and it’s something we have a little bit in common. My parents split when I was six and my younger brother was five and not a lot of contact for the next seven years. And I remember going to court for child support and custody issues at a young age. It’s very confusing, right? Like you said, you don’t know any different and you do, you don’t fit in at some level and it’s hard to quantify or put into words, but there’s some dysfunctionality in every family. But looking back on it, you realize there’s a higher dysfunctionality, in your own family and it affects everybody a little bit differently. And I also heard you say maybe inadvertently that you wanted to have a different relationship with your spouse, with your children, and maybe that’s one of the silver linings with all the challenges you’ve had as a young guy. You’re breaking the cycle of father absence. And it’s laudatory. So again, thanks for sharing.

Christian Paddock: Thank you. Yeah.

David Hirsch: Were there any father figures, coaches, teachers somebody that you looked up to as a young guy or as a young adult for that matter?

Christian Paddock: I had a coach named Jim Stahl, and I’ll tell you, Jim did all the things for me that my dad should have.

I can throw and catch like you wouldn’t believe. I got great hands because of Jim Stahl and I teach my, I teach Addie the same things that, that Jim, coach Stahl taught me when I was a kid. I’m super lucky. I was super lucky. Jim Stahl was somebody that I will just never, ever forget.

David Hirsch: Thanks for sharing. Thank God for individuals like coach Stahl. I think of them as the angels, right? That appear in our lives. And you don’t know that maybe at the time, but you can look back on it and put in perspective the role or influence that they played.

And I’m wondering where did your career take you? You mentioned you were first through 12th grade at Columbus Academy and that you moved out to Seattle at a very young age, 19. And I’m wondering what was it that took you from that point to where you are now at Audi of America?

Christian Paddock: Oh, it’s interesting. So when I was a kid, my mom, the one thing I always remember that she always tried to do for us was we would have one trip or vacation at least, like once a year we would go someplace. And when I was also a kid, I was also, she put me on skis when I was very young. So she, I remember her always trying to gimme those opportunities and activities. Skiing in Ohio is a little meager. The highest point is 943 feet, that’s up in Cleveland. You can ski from the top to the bottom of it. It’s not much. Doesn’t take you very long. But when I was 10 I remember my mom took me to Steamboat Springs, Colorado. I remember going to Steamboat and seeing when I saw mountains, like when I saw an actual mountain, I was like, oh, okay, so Ohio, that’s not gonna work, I don’t think.

I, again, I loved growing up in Columbus. I loved the people. I love the city, but like the view. And so I fell in love. I fell in love with the mountains and the water and the forests and those things I just always craved. And so when I went back to Ohio, it just literally didn’t work. So like I didn’t have a lot of freedom.

I hadn’t had the opportunity to do what I wanted. And so I literally I went and got a job at a ski shop and it paid commission. And lo and behold, I was pretty good at selling stuff and we were paid commission. And so I was making, I was 19 years old. I was making pretty good little bit of money for a 19 year old and I was skiing, I was basically living that ski bum life and I was skiing when I could and working and I went to Whistler for a week by myself when I I was 19.

And I went through Seattle on the way back. I came back through Seattle for three days in March. And it was just stunning. It was just 68 degrees and sunny and beautiful and the city is surrounded by water and mountains and it’s just picturesque and beautiful. And I got bamboozled cuz let’s be honest, it’s cold and rainy and it’s, it means right, it’s nice right now but man, we know what’s coming. And I literally, a year later I literally packed up and I left. And it was funny the day I was leaving the apartment that I had found online. It was January, 1997. They called and they said, Hey, if you can, you might wanna wait a week. And I was like, I can’t wait a week. Like the moving truck’s, like taking my stuff. Like right now they’re leaving. And she goes we just had this big storm and all of our carports just collapsed. And I was like, okay. Ohio, it snows 10 inches, be to work on time. It’s just not, it’s not a big deal. And I remember getting here and being in Seattle for the first time, I was 20 years old and seeing abandoned city buses and cars, like it was the apocalypse, like abandoned on the side of the road cuz the city had, but I fell in love with the city because it’s just beautiful.

Went back and I actually got a job at the first place I ever went, which was the hotel that I stayed in when I lived here or I stayed, I came through Seattle. And I went and got a job as a bellman. Then I kind of parlayed that into working for a private club at the top of the tallest building in downtown Seattle called the the Columbia Tower Club.

And just parlayed that into meeting people and different things and progressed through the restaurant and bar business in Seattle and worked for some of the largest and highest end names in Seattle restaurant scene. And then I got tired of the bar business. And the bar business is a hard industry. It’s fun, but it’s hard. It doesn’t have a lot of work-life balance and it can be unhealthy at best. And I always loved cars. I always loved cars when I was a kid. I still do. And I answered an ad in the newspaper for Bill Pierre Ford in Lake City. Took an a job in an environment with 45 to 50 sales guys. I had no idea what I was doing. I had no idea how to sell cars and figured it out, made it work and didn’t… Had some success doing that. Kinda had some specialties.

In 2004, had a good friend that had been my bar back many years prior and he went to work for an organization here in, in Seattle, in Bellevue. And he said, Hey, you gotta come check this out. You gotta, this place is great. And I took a job with an Audi store in Bellevue in the summer of 2004. And I took a job as a corporate trainer with Audi of America after having some success with that and got some name recognition and was fortunate to be offered this position to help stores learn about not just the product and the history of the brand, what makes an Audi an Audi, but really what makes that car shine and different and the emotional connection that, that sometimes we feel to a machine.

And so what I really try to do right now is I try to be a coach, cuz right now I really only feel happy or good when I’m helping somebody else. So seeing those moments where you teach somebody or help them understand something, it’s fundamentally rewarding for me right now. Makes me feel, it makes me feel genuinely happy.

David Hirsch: That’s outstanding. Thank you for sharing. Very circuitous career, but it seems like you’re in a good place. You’re in the auto industry. You said you love autos. You might have had a good level of success selling and making a living doing that. You’re in more of a management capacity, working in HR and helping others have successful careers as well. So thank you again for sharing.

I’d like to switch gears and talk about special needs, first on a personal level and then beyond. And, I’m curious to know, before Hazel’s birth, did you or Megan have any exposure to the world of special needs?

Christian Paddock: No. No. And we didn’t expect to. Our pregnancy was normal and previously as an only child I didn’t ever have siblings or cousins. I’d never had anybody else in my life with special needs. And Megan didn’t either. It was very new when this all happened. It was very, it was extremely new to everybody.

David Hirsch: So what was Hazel’s diagnosis and how did it come about?

Christian Paddock: When she was born just beautiful baby. Just perfect and beautiful and healthy, and almost 10 pounds. Just a beautiful little bundle. If I’m looking at picture right now, just a beautiful baby. The first night, her sugars kept dropping. They kept dropping and it wasn’t considered something we had to go to the NICU, but it was considered something they were just keeping an eye on, this sugar fluctuation.

Day two, as we were expecting to get ready to go home I went back to our condo, which was only about 10 minutes from the hospital she was born in. And I had a good friend that was watching the dog and watching the condo for just a couple days, just, and I was just gonna take a shower, grab a couple things we forgot. Head back to the hospital with the expectation that baby was coming home.

And I was just in the door. I wasn’t in the door five minutes, and I was just grabbing some things. And Megan called and she said, verbatim. She said, don’t freak out. And I was like, okay. It’s not a great place to start. She goes, the photographer was here taking pictures and the baby turned blue and stopped breathing. And I mean I understand why she said don’t freak out, but those are some words that I just really did not expect to hear. So obviously dash back to the hospital very quickly. And she had literally while taking newborn photos, cuz they come to the room and they put you in a little basket or little set up, a little photo shoot in the room. And this young girl was taking pictures and as they were getting done or finished, I guess she was wrapped up or swaddled and Megan looked down and she said Is the baby blue? Apparently this girl said yes. She just went running for the door. And it’s a wild thing. I’ve seen it too many times when there’s just a lot of people that come into a room like that all at once, and there’s a lot of noise, a lot of action, a lot of activity, and it’s scary, frightening. Like it’s a fundamentally frightening thing. And I wasn’t there. I wasn’t present. I was away from, I was at the house and I felt bad about that when I got back, and she said hey, we’re in the, we’re in the NICU so you’re gonna go up an extra floor.

I get back, I’m frantic, obviously running back into the hospital Now she’s in a room, but now it’s, a little bit more intense. Doesn’t look like a hotel room. It doesn’t have its own tv. It doesn’t have a bathroom. It’s not as comfortable. Things are changing and she’s having these episodes, she’s having these moments in time that seem to be happening sometimes a couple times an hour, sometimes maybe once every two hours.

But she’s having these episodes and she would look like she was pursing her lips. She would like just purse, purse, purse your lips down, and then she would literally turn this kind of dusky blue. And it was because she wasn’t breathing. I She literally would stop breathing and they would shake her. They’d bang on her chest or they’d it, it was a, when they would see it, cuz they were obviously where they were watching The reaction was, it was frightening from the nurses or the doctor who was present to see it. I was definitely concerned. I definitely was very concerned. And so we were in that hospital for four days until doctor, they did a EEG and they did a very simple, like a four lead EEG, and the doctor hooked, hooked this up.

And he looked at these activities, this brain wave activity from this very simple feed. And he said, okay, that’s not right. He’s seeing these activities and spikes and he says, okay, something’s up here. And he takes a picture of it with his cell phone and sends it to his buddy who happens to be an infant neurologist and what we would later find out would be a world class infant neurologist, a man who is very well respected in his field. And he sends him this picture and says, what do you think of this? He goes, that’s se, that’s seizure activity, a hundred percent no questions asked. That’s seizure activity. And they’d been giving her caffeine to try to get her, like they were trying everything, but now they say, oh, that’s seizure activity.

So they start with phenobarbital, which is just the, it’s the worst. It just, they just start throwing things at it. And then they tell us, okay, so here’s what’s going on. She’s having seizures. This four lead EEG we have is not what you need. We need to get you much… This is broadcast tv. We need high definition.

So that’s what they literally said. And they said, we’re gonna move you, we have to move you to Swedish across town. And this is on like a Friday. There was traffic. So they say, Hey, we’re gonna move her. They say it’s gonna be hours, it’s gonna be hours before we move her. Because it’s a process, right?

This ped’s unit’s mover it’s gonna be a minute. And so they say, go get some food. You’ve been here for four days. Go to the cafeteria, get some, everything’s gonna be okay. We’ll pack everything up and then they’ll be here in a couple hours.

So we got the elevator. I don’t think we went down three floors. I don’t think we made it a hundred yards towards the cafeteria. And my cell phone rings and it’s what looks like one of these hospital numbers. And they, I pick up the phone, they just go, Transport’s here. And I was like, what? What do you mean transport’s here? What do you mean transport’s here? Back to the room.

We literally go running back to the room and they’re in the room. Transport is there, and they’re already, they already have her loaded into this, it’s a gurney, but with oxygen and it’s, and she’s in there. We can’t touch her. We can’t. And the room is packed with people and they, we get back to the room and they say they were here dropping off another kid and they’re ready to take her.

And it was just like, it was so upending. It was so chaotic. And so it was just this upended this chaos of okay, she’s having seizures. Now we gotta move to another hospital. And they wouldn’t let me go. We had to drive and they said, Hey, don’t try to follow us.

And I, cuz there was terrible traffic and I was like, I’m probably gonna try to follow you. Cause I was just so upset. I was so distraught. Like I didn’t wanna let her out of my sight. I was and they took her across town in like rush hour traffic lights and sirens. And it took us, and then we get to Swedish and now the intensity is ramped way up because now we’re in a unit, a ward with eight other babies and we’re in a ward with babies that were born just two or three days post viability.

Things look a lot more serious. Now we’re sterilizing up to the elbow, now we’re sterilizing our cell phones. It was much more intense. But they put her onto a, like a 24 lead video EEG, with audio and video recording. Now the data, the information they start getting is much more complete. And so now they start seeing that these episodes are occurring. Even when she’s not stopping her respiration, she’s still having these episodes. These things are still happening, even though they may not be as visible. So now at least now we know what’s going. And we were there for, we were in that hospital for another six days, so we were in about 10 days worth of PICUs, NICUs.

And then we got discharged. We got discharged after they finally said, okay, we have a handle on this. We know what’s happening. You’re gonna go home with medication phenobarb, which again, I believe is just a mask. Doesn’t fix anything. It’s just covering up what was happening. And we went home. We went home for the first time in 10 days with this beautiful baby that we’d been waiting to bring home for almost two weeks.

And then we tried to adjust. We tried to figure out what was going on. It was a lot and it was a lot. And we saw with her, I obviously she was having seizures a lot, and it was very painful. It was harder, even as she got older when we still didn’t have complete control over her seizures as she was 7, 8, 9 months. It was one of the hardest things I can ever remember. Some of the most painful things was holding her while she was having a seizure and just telling her it was gonna be okay, again not knowing that it was gonna be okay. It’s just hard. It’s just so hard to not be able to do anything and felt very just watching her and not being able to stop it.

David Hirsch: Was there some meaningful advice you got at that point, at six or eight months that helped you and Megan put the situation in perspective?

Christian Paddock: Yeah, I think for us it was the medical care that we were getting. Again, being in Seattle a lot of advantages with what we have access to here. And so we were getting great advice from our, Megan was being well cared for by her doctor. We were getting great care from Swedish through their infant neurology program. And lo and behold happened to find a man who was literally a, the preeminent infant neurologist in this area. It’s a, it’s astounding what this man has done.

And funny story, the first time he met her, the first time he saw her in the bassinet, he was just talking about how beautiful he was or she was. And it was so funny because he picked her up out of the bassinet, which was fine. She wasn’t hooked up to anything. He picked her up and he bonked her head on the side of this bassinet. It was the first thing he did. It’s the first thing he did when he picked her up the first time he had like interaction with her, he bonked her head on that bassinet where it was like, Hey, doc, you’re supposed to be the guy, but what is this? What are you doing? And we always, yeah,

David Hirsch: He didn’t play the game operation when he was younger.

Christian Paddock: Yeah. I was like, what are you doing? Yeah. Many years later we still joked about it. Still, it was still the, this funny story was that, Dr. Satero bonked her head on the side of the bassinet first time he picked her up.

So the diagnosis came when we started seeing Seattle Children’s. So she was getting, care through Kindering, which was an amazing organization that we, I still have interaction with now. And then her medical care really transferred over to Children’s because they had some great resources.

And what they did, because they were searching for answers, because her delays were significant, her vis… she had a visual impairment called cortical visual impairment, which is being caused by the seizure activity. She had low muscle tone, which we would later find out be caused by this disorder. So we knew that she was suffering from basically global delays.

And so Seattle Children’s was looking for an answer as to figure out what would be causing those types of delays. Cuz there was nothing that stood out. There was nothing that… she looked like a beautiful, healthy, lovely baby. And they ended up sequencing her entire DNA, like line by line. They sequenced her genome and they found a mutation in this particular line of code, the ninth line. And this disorder came to be known as STXBP1. It’s only been studied for barely 12 years. First studied in Japan of all just oddly they were studying gen, other genetic labels or markers, and they found this sort of, identified this marker.

And at the time, I remember in Seattle Children’s when we went to just what we thought was a fairly standard appointment. And I remember the… it was Dr. Sateroi’s assistant. That’s minimizing her title, but that’s the best way I can think of it right now. I remember when she walked through the door, I remember she had a very, I don’t wanna say grim look, but she had a very serious look and I didn’t remember ever seeing Quinn have that look.

She looked very serious. And I remember when she sat down, she had a folder and she looked serious and I, it was just, I remember it very distinctly and she said I have some news. I said, she said, we have a diagnosis. And she said, Hazel has a rare disorder that’s random. There’s no cause. It’s not caused by outside influence or DNA or it’s not passed on. It’s just random. And it’s called STXBP1. And it’s only been identified in approximately 300 people in the world. It’s only been identified roughly 300 times. And I didn’t know what to say to that. I had no comprehension or… I had no idea what to say that because my immediate thought was what’s the treatment, like what do we do? And I knew, I think in the back of my mind that there wasn’t a treatment. I think as a man, I think we want to fix things. I’m gonna take action, I’m gonna fix things. And I just had in the back of my mind that there wasn’t gonna be a fix to this. There wasn’t just gonna be an easy fix.

And it was very, again, it was one of those sobering moments. It was one of those things I just remember very clearly hearing this news that I just… I think maybe we expected something, but not like that. Not to the extent of your child is one of 300 people we’ve identified in the whole wide world and we don’t know what to tell you next. And oh, hey, the best place you’re gonna find information is probably Facebook. You’re gonna go join a Facebook group and you’re gonna join a group of parents who are you’re gonna find are actually gonna have the best information and the best advice, and they’re gonna understand what you’re going through.

They’re gonna understand because they are one of those few hundred people that, that are in this country, or you know that understand. And that was wild, to learn more about this disorder through Facebook and through the people that were already experiencing it, already living it. But at least we knew, right? At least we knew. Now we had at least an idea what was going on, what was causing this.

And so then what we did is we worked to help her with her vision disorder. She had a corrective surgery a week before her first birthday that reattached the muscles in the back of her eye to basically tow her vision inward, to give her focus and clarity and the ability to better see depth and motion. To say that she was functionally blind is really tough, but she had very much not seen 3D or motion and so her vision would turn off. Her vision would literally disable itself. And you could watch it. You could actually see it happening. So not even a week after her surgery, we had seen just immense change. She seemed more motivated and curious, and she was moving around more because she could see. She was engaged. And I remember when her vision specialist came to the house, who is still a dear friend, we still talk to her constantly… She’s just lovely. Hazel sat up and watched Tracy walk through the door. She literally looked at her, watched her at the door and watched her walk around to the living room and into the family room.

And Tracy was stunned. She was stunned and she almost started crying. I could see her like almost getting teared up. Cuz she’d been her, she’d been Hazel’s vision specialist for a full year now at this point. I said, okay, what do you think? She goes, she… it’s amazing. I said that’s what we thought too. I said, can you think of a time you’ve seen this type of change so quickly in another child? And she took a moment. She literally stepped back. She like thought about it for a moment. I saw her, like she really considered it and she said, and she’d been doing the job for 25 years. She said, I can think of one.

I can think of one child where I’ve seen this sort of dramatic change and it was just a fundamental change cuz she could now see the world around her. And so that, that was right before her first birthday. And that was a really, a sort of a milestone. There was some positivity, some light, some things that like, okay, we can fix some of these things, right? We can make some of these things better. We can make her life better. We can help her with the seizure activity. We can help her see better, which will make her be more curious, which will then move all these things along. And so I remember being very positive. I was so scared when they took her for the surgery. I was so frightened. But a week later, here she is. She’s looking and seeing and watching. It was amazing.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad To Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now, back to the conversation.

David Hirsch: Were there many other milestones like that?

Christian Paddock: Yeah.

David Hirsch: You can reflect on from age one to six.

Christian Paddock: Yeah. So this community, this STX community. They talk about something called inch stones because so many of these children just don’t hit, they don’t hit milestones. They’re not, you cannot judge these children against a normal metric. You can’t judge them against your other children. You can’t judge ’em against your neighbor’s children. You have to let them do things as they would, and it takes some time and patience and so they really talk about inch stones and those small victories and these little things that you, you take with you every day, and they may not be your child standing up and taking their first steps. And for us it was really, it was her vision caused her to start moving around more. She would move around the house more. She would crawl, she her tummy time, she was getting stronger.

We started understanding with this disorder that it really affects the way the neuron, the neuro pathway, how a neuron crosses that pathway. And that’s why there’s delays in processing. But it also affected things like her muscle tone. It affected things she had, she had low tone, so standing or walking. That little girl put so much effort and time into, she just never quit. I never saw her ever quit. Because we had her doing PT and OT and speech and hippotherapy, aqua therapy. We were doing everything. And again, because we were fortunate to be able to even have access to these services.

And I, to be honest too, we were very fortunate to even have a diagnosis before she was a year old. Years later now they’ve identified about 200 more people and many of them we’ve noticed are far older. And that tells you that they were misdiagnosed, undiagnosed. They were, they were never properly diagnosed and these people have been looking for an answer for decades. And so I feel so very fortunate that we got an answer so soon. It was a hard answer to hear, but at least knowing was such a big thing and we’ve met people that didn’t know for decades and that just, I can’t imagine the, it makes it, it’s just hard to hear.

It may. It makes my heart ache because I can imagine that they were just searching and searching for an answer. And so we pursued it with a standpoint of addressing her seizures through rigorous changes in medication. And we did, we actually managed her seizures and actually found success with Epidiolex, which is the only FDA approved cannabis derived medication.

Her seizure activity was virtually stopped within a few days, but it was amazing to see something like that really change and dramatically change her life fundamentally to be able to control those seizures. I, it was so hard on her. I could just see it. It was, it’s exhausting, but it was also so exhausting for us. It was so hard to watch and so tiring. And it just, [sigh] that sadness, that, that sadness that just makes you tired, right? When you’re just holding your child and it’s just it’s very exhausting. And so to be able to overcome that and then to really watch her make such strides with her occupational therapist and her physical therapists because they pushed and pushed her.

And she tried and she was making such great strides and her standing was getting so much better and she was getting so much stronger in terms of her core support and being able to actually, she was pulling herself up on the couch. She would stand up, which, and that came, that didn’t come till she was five years. I mean that, that took years. And and it was tough too because, she was classified non-mobile, but she moved around. She just wasn’t ambulatory. She wasn’t walking, she was moving around and they that she was non-verbal. Yeah, that’s right. She wasn’t talking, but she would definitely let you know. She would definitely let you know if she needed something or if she was unhappy. And so it was so amazing to watch her progress and get stronger. And then to, one day just be sitting on the couch and have her stand up and grab the couch and stand up. The surprise and laughter and the joy that brought was… IT’s a milestone, right? It’s a milestone. That’s a real milestone for us where you just be getting inches and inches. And now here’s this huge milestone where Hazel just pulled herself up and she’s standing up, or she’s… she’s making these huge steps forward. And that was an amazing thing to see because I’ll tell you what, that kid never quit. She just kept going and going. She just never gave up.

David Hirsch: That’s amazing. So I’m curious to know where did Addie come into the picture?

Christian Paddock: Almost two years apart, almost two years apart. Megan told me that we were having our second by, I was going to a dear friend’s bachelor party and Megan gave me a little go bag to take with me. I had a little Seahawks shirt in it, cause all the guys were football, it’s fall. And I took it outta the bag. I was like, oh, that’s great. I’m, in the car. I’m driving this party and I come back three days later and I don’t mention what else is in the bag because I didn’t know anything else in the bag.

And she goes, where’s that bag I got you? I was like, oh it’s in my car. I hadn’t unpacked anything. She literally goes and gets my keys and goes out to my car, gets the bag, and she pulls out the Seahawk shirt. And I was like, Hey, that’s, I love it. It’s great. It’s great. I love it. And then she pulls out a little, outta the bottom a little Seahawks, like onesie, like a little jumper, like a little….and I dead… I dead eye, looked at her and I go, that’s not gonna fit Hazel. Dead eye, just looked at her. I was like, that is not gonna fit Hazel. And she looked at me like I was so dumb. She just looked at me like she, she cocked her head to the side and she looked at me, she started nodding her head like, yeah, it’s not gonna fit Hazel, guy. And I was like oh. I, it was just, it was hilarious because I, I had been in the woods with 20 guys for three days. I was a barely functioning human being. It was a…It was an event. It was a thing.

David Hirsch: So I’m wondering what were the circumstances that led to her untimely death?

Christian Paddock: July of 2021. So many of these children exhibit so many different traits and characteristics, but they also have, they put things in their mouth inappropriately and you’ll often see we always had these tuby chewers that will literally clip to a shirt or a a highchair or the, they’re always present because these kids would literally always be chewing on something. And it’s a neural pathway that puts me in your mouth. It just goes right to the brain, right? And so many of these kids would put things in their mouth they really shouldn’t put in their mouth. July of last year I was in Portland. I was about 180 miles away from home. 1:30 on a Friday afternoon, I get a call from Megan, which is very odd because she knows I’d be right in the middle of my work day on a Friday, which is the busiest day.

And I jokingly unfortunately I answered the phone, Hey, what’s wrong? But it wasn’t Megan. It was a battalion commander from the local fire department, and it was utter chaos. I could hear in the background just utter chaos. And then he said your daughter has ingested a foreign body. She’s gotten something in her throat. Her heart has stopped, her respiration has stopped. We are working to get a heart rate, heartbeat back and respiration back. And he said, where are you? And I said, I’m in Portland. And he said, you need to drive safely, but you need to get here now. And I grabbed my bag and went running outta this beautiful showroom, scared a brand new hire, which probably scared this poor girl half to death.

And I went running cuz my electric vehicle was parked in the service center at the back cuz I had to charge the thing to get home. And I’m just basically running. And as I’m running there, somebody else calls back and they ask me if I was on the way. And I literally remember like falling, like I remember sitting on the pavement.

It’s hot, it’s July. I remember sitting on the pavement like sitting on the pavement in the middle of this parking lot and this person was saying, okay we’ve got a pulse and we’ve got her respiration back. We’re gonna start transporting her but you gotta get here. And so I, I run, I get to the car and the Director of Fixed Ops, who was a good friend of mine, happened to walking by and he was trying to say hi. He looked all happy. It was beautiful Friday afternoon and he like waved at me, and I rolled the window down and I just, I remember saying, I think my daughter died. And I just remember looking at his face and it was just horrific. And. I took off. It took me an hour to go 13 miles to the border. From the border to Seattle was three full hours. From there, I had to stop to charge the car for at least a couple minutes to get to downtown Seattle. So I didn’t get to Seattle until about 5:30.

And what I found out when I got to the hospital was that we had a diaper changing box that had diapers like a floor, like a pad and a box of vinyl gloves. And we had a respite care in the house like two times a week, three times a week sometimes. Just to give us a little break. Respite. I would never have used like vinyl gloves to change a diaper. But unfortunately, she got this box off the shelf or off the couch or wherever it happened to be, and she pulled a glove out and she got this glove into her throat, into her mouth with the fingers, like down her throat with the cuff sticking out. And it suffocated her. Yeah, she, it suffocated her. And my wife was like in the other room. It just, she was in the other room. It doesn’t take very long. It doesn’t take very long.

I was fortunate. At the hospital, my closest friends actually were able to get to the hospital before the ambulance reached it from our own home because they lived in downtown Seattle proper. And I was lucky that Megan was able to get there with a fire battalion chief rolling lights and sirens the entire way. So I was fortunate that they were there for her when I wasn’t.

That four hours is… I frankly had panic attacks and would have flashbacks in traffic. That’s why I don’t drive through downtown Portland. I go the other way. I literally was having like reactions, like being in my own car. It really was really adversely affecting me there for a while. But we had some hope. So that was a Friday afternoon. We had some hope on Saturday. Looked like she had tried to maybe open her eyes. On Sunday they, they did a, oh gosh. They did an MRI. They took her and they did an MRI. And it must have been Sunday morning, they told us that basically the trauma would not be survivable. They basically, the doctor said that after the, looking at the MRI and the damage to her brain that she was not going to survive.

I already knew in the back of my, like my heart sounds… [sighing], I, I knew that I wasn’t gonna see her open her eyes again. I knew and it, I think I’d been steeling myself for that knowledge, like trying to hold myself together cuz I knew that was probably coming. But Megan didn’t, and Megan had really… and I had tried to remain positive and tried to remain upbeat, but also pragmatic, and I just remember being very numb.

I remember being very I had no reaction. I was just very I don’t wanna say detached cause I was very much present, but I just had zero reaction and Megan had a very hard reaction and my lack of reaction, it freaked her out. Freaked her out. Cause I was just, I was numb from having thought about this for the last three days and that I was just hoping that wasn’t what we were gonna hear.

But as soon as that happened, they asked what our wishes were, what we wanted to do, and if we would consider organ donation. I don’t think we’d ever either of us have given much thought to it. Cuz I’ve checked the organ donation card on my driver’s license since I was 16 years old. It’s never been something I’d ever thought about not doing.

The doctor said, if you’d like to take a moment, we’ll step out. You guys can talk about it. And literally wordlessly, we both looked at each other and we just nodded. We didn’t say anything. We both just nodded our heads and we, I looked at the doctor and said, yeah we’ll do that, we’ll do that. If there’s an opportunity to help somebody, then yeah, I’ll do that.

At that point is when her care sort of changes from Children’s Hospital to Life Center Northwest. Life Center Northwest takes over from that point in time. They spent the next day coordinating where her organs would go, with the heart being the biggest priority. That was the organ that cannot travel very far, it has to go fairly close by. And so Wednesday, they spent the time doing that. I went to the hospital and spent the day with her, put pictures on her door.

And I went to, on the way home, I went to a restaurant on the way home to have food cause I hadn’t eaten in days. And long story short, the woman, my server recognized me from being in this restaurant previously and didn’t let me pay for my meal because she could tell I was distraught because while I was eating Life Center Northwest called and told me that they’d placed her heart. I’m sitting in this restaurant, there’s people everywhere, by myself, look like a maniac. Crying, disheveled. It’s not good. They said tomorrow, Thursday, the 22nd at 5:00, we’re gonna, we’re gonna take her. And I was like, okay. And I called Megan and I told her what’s going on. And then next thing you know that my servers tell me I’m not paying for my $75 lunch. And I went home and the next day we went to the hospital and spent time with her throughout the day.

And they lined the halls. The pictures are beautiful. They lined the halls and they blew bubbles over her all the way down the hall. It was beautiful. Life Center Northwest had given us these small ceramic hearts that each myself, Megan, and Addie could all have. We have the small ones. The bigger ones that these fit into stayed with Hazel for the entire time. If we couldn’t be there, they were always with her and they walked her to the emergency or the operating room and we said goodbye.

David Hirsch: It’s very powerful. Thank you for sharing. It’s palpable. It just gives me chills to think about it. So the good news, if I can say that, is that while Hazel’s…. Where did these organs go? Who’s benefited from them?

Christian Paddock: Yeah, it was amazing. They said in Washington state in 2021, there was only about 250 organ donors across the state, the entire state for the whole year. And for Hazel her corneas restored site to two different adults, which I thought was just amazing considering that for the first year of her life she struggled to see. And yet right now somebody is seeing the world through Hazel’s eye or eyes. It’s just such an amazing thing. Her kidneys went to two different adults, which we didn’t even know was possible. We just assumed her organs would go to children.

About two weeks after we got an update, and they said her kidneys went to two different adults, a woman in her forties and a man in his sixties, and it took them both off of dialysis. And I didn’t know that was possible. I had no idea that was even a possibility. They said her liver went to a man we would later find out lives in Oregon. I’m, I hope to meet him very soon. But her liver went to a man, a grown man. And I even asked, I said, how is that even possible? And they said they wouldn’t be of large stature. They wouldn’t be big people, but an adult could live on one kidney from a six-year-old and could live healthy and have a healthy life.

And then her heart went to a little boy, the only child who they say was quiet. They were, the family wrote us a little note. They said the little boy was quiet. That’s funny cuz Hazel was arguably pretty quiet. They said that he likes to eat. Well, Hazel liked to eat everything, so not much that kid would not eat. She loved to eat. And, and they said that he likes to spend time with his dad. And I said, that kid’s gonna be okay.

David Hirsch: [laughing] Yeah. Very powerful. Thank you for sharing. It’s a sad story, from one perspective, losing your oldest child, but I’m hoping that there’s some joy that resides in your hearts with the fact that while she was here for such a short period of time, in so many different ways that her life’s had a very positive impact on those individuals that you described.

And then I’m hoping by virtue of you sharing your story and maybe inspiring some others along the way as well. So under the category of advice, I’m wondering if there’s a bit of advice that you can share with a dad or parents for that matter, who find themselves in this precarious or delicate situation.

Christian Paddock: Years ago, a good friend of mine said… We were with Hazel at a birthday party, other kids running around, and I think he said something like, he said, I don’t know how you do it. And I was like, what do you mean? And he goes, I’ve never seen you complain. You never, you don’t seem down, you just do it.

And I was like yeah. You don’t have a lot of choice. I could sit around and I complain, I could complain, I could, woe is me. Do I cry? Am I sad? Absolutely. Am I gonna take Hazel to a birthday party and carry her in if I have to? Absolutely. I’m not gonna think about it. We’re just gonna do it.

We’re gonna make it work. So the advice I would give is, one is always be an advocate for your child no matter what. If you need questions or answers or you don’t know, ask. If you think you’re getting bad information or bad advice, find somebody else. But advocate for your kids in a way that’s meaningful because it’s been so hard to watch these kids that I know have been, they’ve searched for an answer for years and years. Oh, he is autistic. No, he is not autistic. He has a rare genetic disorder. And so if you, you feel like the answer’s not right, or if you’re not sure, don’t give up. Don’t give up. Just, I know it’s so easy to say that. It sounds cliche, but don’t give up because for us, just finding answers allowed us, that wasn’t great news. But at least allowed us to know what was happening and allowed us to know what was the next step and where to go from that point.

Because I didn’t know how I was doing it either. I didn’t, I was making it up as I was going along. I didn’t have any clue what I was doing. All I was trying to do at the time was be a good partner, a good dad, present for Hazel. I had to pay attention to things I had never had to pay attention to before. I had to become more patient in a way that I was not previously capable of. It changed me. It changed me fundamentally. It physically changed me. And that’s gonna happen. It’s gonna happen. You’re gonna be a different person after this. I never would’ve thought that this was what would’ve happened with our firstborn. But don’t give up because there are answers out there. There is a way to make your child be a part of the world and be involved in the world around them that doesn’t have to require them to be excluded. And and I know it’s not easy. I know it’s not easy. I can only say that… just keep going, keep pushing. Giving up’s not an option. It’s just not in this case.

David Hirsch: Yeah. Thanks for sharing. Let’s give a special shout out to Louis Mendoza, formerly the executive director at the Washington State Fathers Network for helping connect us.

Christian Paddock: Absolutely. Such a great, which is a great man and a great organization.

David Hirsch: If somebody wants to learn more about STXBP1 or to contact you, what’s the best way to do that?

Christian Paddock: Yeah. On Facebook, Hazel has her own page, which is Hazel on the Move, which has gotten a lot of traction even before because we used it to show her progress in the things that she was doing, all the things that would, that she was involved in.

And there is a foundation which can, it’s the first thing that pops up, even if you’re using Bing, it’s the first thing that pops up and it’s just STXBP1. And it’s Disorders is the actual foundation. But these are the people that are looking for a cure through things like gene editing, crisper, things like that, gene editing to find if it was just as easy as simply clearing or fixing this one line of code, could you have a dramatic impact on these people’s lives?

And I really, I think there is hope for that. I think that in our lifetime, that is something that we could very much see. If you’re also interested in Hazel’s story as well, Life Center Northwest, so lcnw.org, life center northwest.org. Hazel’s story is under the blog. Her story was shared by the CEO of Life Center Northwest to open their donor and recipient meetings, and he opens that meeting telling Hazel’s story.

David Hirsch: Very powerful. We’ll be sure to include all that in the show notes. It’ll make it as easy as possible for people to follow up. Christian, thank you for your time and many insights. As a reminder, Christian is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org. Thank you for listening to the latest episode of the Special Fathers Network Dad To Dad Podcast. I hope you enjoyed the conversation as much as I did.

As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution. I would really appreciate your support. Christian, thanks again.

Christian Paddock: Thank you, David. I really do appreciate it.

Tom Couch: And thank you for listening to the Special Fathers Network Dad To Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com, groups, and search “dad to dad”. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad To Dad Podcast was produced by me, Tom Couch.

Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.