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myBurbank Talks
myBurbank Talks
myBurbank, myCommunity: Alisa Nelson, “Charlie the Champion’s” Mother
On this episode of "myBurbank myCommunity,” reporter Ashley Erikson sits down with Burbank mom Alisa Nelson to talk about her five-year-old son, “Charlie the Champion,” and the charity softball tournament their family is organizing to fundraise for congenial heart defects.
Charlie Nelson was born with a condition called hypoplastic left heart syndrome (HLHS) which means that he was born with only half of a heart. Congenial heart defects (CHD) affect 40,000 children that are born each year but only 1,000 children in the U.S. are born with HLHS, and must undergo a string of surgeries and procedures all within their first three years of life.
Alisa shares their story and what the last five years of life has looked life for Charlie and their family. Their Charlie’s Champs Charity Softball Tournament is coming up on February 3rd at Burbank's George Izay Park, and registration for teams to participate closes on January 27th. Listen to the episode to learn all about the tournament, how to get involved, or how to donate to their fundraising campaign.
For more info on Charlie, see the myBurbank feature article here: https://myburbank.com/charity-softball-tournament-registration-open-in-support-of-charlie-the-champion-born-with-half-a-heart/
To learn more about the tournament and to donate, click here: https://donate.heartworksinc.org/event/charlies-champs-softball-tournament/e547780
From deep in the Burbank Media District. It's time for another edition of my Burbank Talks, presented by the staff of my Burbank. Now let's see what's on today's agenda as we join our program.
Speaker 2:Hi, welcome back to my Burbank, my Community. My name is Ashley Erickson, I'm a my Burbank reporter and today I have with me Alisa Nelson, who is here to talk about a charity softball tournament Her and her husband are organizing on February 3rd to raise money for congenial heart defects in honor of their son, five-year-old Charlie, who was born with half of a heart. Thank you for joining us today and talking about your son in this tournament. We're really excited to have you. Thank you, I'm thrilled to be here. So tell me about Charlie first of all. He's five now, yes, and tell me what his story is, what his heart defect is that you've been dealing with these last five years.
Speaker 3:Yeah, so Charlie is five years old. Like you said, he started TK this past year. He's a super sweet, happy, crazy little boy. You would never know looking at him, unless you knew that something was actually wrong. So he has something called hypoplastic left heart syndrome, which basically means that he was born with half of his heart severely underdeveloped to the left side, as well as the different structures on that side, on the left side super duper small. So, for example, like his aorta, which comes out the top of the heart, is a left-sided part of the heart. It was so small it was basically like the size of a strand of spaghetti, uncooked, when he was born. So he also is missing the left ventricle, which is the main pumping chamber to the heart, as well as a few other things. It's like four things are involved with the defect.
Speaker 2:And you're a NICU nurse at Children's Hospital? Yes, and so you've been around very fragile babies and you were pregnant there when you got this diagnosis, so you knew ahead of time.
Speaker 3:You found this out in the ultrasound yes, I found out about the big anatomy scan ultrasound I think it was like 20, 21 weeks when they check everything. And it's crazy because he's our third child. So we have a 12-year-old and a seven-year-old also, and we waited a long time before we had kids, in part because we were so young and we got married and we wanted to establish the careers and get the house and all that stuff, but also because I was working in the NICU for probably seven or eight years before we even had our first child. I was terrified from all the things that I saw all the sick babies, all the people who had done everything right and still had a sick child and I was just so afraid that that was going to be us. That was probably one of my biggest fears before we had kids.
Speaker 2:Do you think that being a nurse, though, and being around that has really prepared you to take this on with Charlie?
Speaker 3:I do. I think, as far as the knowledge of the day-to-day, like the meds, the inpatient stays in the hospital, and the information and being familiar with things. Yes, in a lot of ways it has kind of made it a lot worse because I know the fears of the worst-case scenarios.
Speaker 2:Yeah.
Speaker 3:And I remember taking care of patients. You know, the day that we got the diagnosis I remember immediately thinking, oh, this is bad. And my husband, he has no medical background and so he didn't know how bad it was. He didn't know what to base that on. And I remember driving home from the ultrasound that day and thinking about patients I had taken care of with this diagnosis.
Speaker 2:You had already heard of this before. Is this something that comes into the hospital often?
Speaker 3:It's a pretty rare diagnosis but because I work at Children's, we get all of the worst of the worst cases or the most severe significant cases. Children's has an entire heart institute, so almost all of the cardiac patients are treated on the second floor, whereas the NICUs in the third floor, so most of these patients do go to the second floor. However, there are quite a few of this diagnosis or other cardiac diagnoses that are going to be in the hospital more long term or chronic as infants, and so they will come to the NICU for more like long term versus acute care that they will get on the second floor. So we are familiar with the diagnoses and taking care of these patients too, and this isn't one that we would see super often, but I knew that it was a significant one and my mind immediately went to these couple patients that I had taken care of, one of which had very poor outcome, and just immediately think of like the worst case scenarios all the time.
Speaker 2:So you mentioned that your husband has no medical background and didn't really understand or grasp the severity of it. So what was that turning point where he really understood what was going on?
Speaker 3:I just remember looking at him during the ultrasound or right after we got the information and being like this is bad. And he was like well, how bad, it's like bad, this is really bad. And I kind of was spiraling from there and thinking about these patients that I had taken care of in the past. He ended up reaching out to our good friend who is a neonatal nurse practitioner, who used to work with me at Children's who they've moved away since, but they're like our best friends and he texted her that night and was like I just need to know what are we dealing with here? Like on a scale of zero to 10, how bad is this? And she responded with this is a 10. And I think that kind of shook him a little bit and made him realize like oh yeah, shoot, this is definitely serious then. And that kind of brought him into a little bit of reality.
Speaker 2:And so you've had these busy five years with him, right? I mean from the time that you gave birth till recently he's been in treatments and surgeries. So walk me through what the last five years have been like with Charlie.
Speaker 3:So we knew he was going to have this before he was born, obviously. So everything was very planned out. He was born at Hollywood Presbyterian Hospital, which is right behind Children's, so that he could be transported there as quickly as possible. Right away when he was born they took him and immediately started an IV and a special medication to make it so that his heart would be okay. He went to the NICU there. He had some lines placed.
Speaker 3:The CHLA transport team came and there were a number of people that I'm very familiar with coworkers and friends were on the transport team coming into my delivery suite, my labor and delivery suite, which was a little awkward since I had just given birth. But it was kind of reassuring as well because I knew and trusted these people wholeheartedly. And they took him in the incubator the transport incubator they put him in the ambulance, they drove him literally around the corner into Children's and then brought him up to the cardiothoracic ICU. So that was the night he was born and then they stabilized him. He was there a few days. He actually came early. We had a scheduled induction date and then a scheduled surgery date based on that, but he came like three weeks early. So everything was kind of. We were just kind of shuffling.
Speaker 2:You're also dealing with a very small baby, smaller than you anticipated, right A?
Speaker 3:little. All my babies were like almost the exact same size, within like an ounce all three of them, which is crazy because the first two were a week late and he was three weeks early.
Speaker 2:Your body's like. This is the amount I can do, Exactly.
Speaker 3:This is what my placenta can handle, this size child. So they took him right up there to CTICU and Matthew went with him. My mom stayed with me so we had a few extra days with him. That wasn't originally planned, which was actually really nice. It was through the weekend and we had a lot of time to just like hold him and work on feedings by mouth which we knew would be an issue later and just practice, love him and all that stuff. So when he was five days old he went for his first open heart surgery and that's called the Norwood. He also placed a little shunt which is basically the size of like a straw diameter to help with blood flow and like basically his entire circulation was based on that little straw. That's the riskiest surgery of all, and after they do that surgery they leave his chest open for two days. Wow. So you could actually see his heart, see his heart beating in his chest for two days. Wow. It has like a film, like a covering over it, but still you can see it.
Speaker 2:Yeah, I'm sure it's very scary as a parent just to be, like you know, see your child's so vulnerable.
Speaker 3:Yeah, yeah, and for me, like I knew what to, we both knew what to expect at that point and I had seen those patients in the hospital before myself too. But knowing that it's your baby is so different, and for my husband too, who's never seen anything like this, it was a lot, but he actually recovered fairly well from that surgery. We were there, I think, like three weeks total for that hospital stay. We went home. The time between that and the second surgery, which he got when he was five months old, is called the interstage period, so that period is very intense. We have to do a lot of monitoring at home. We had to check his oxygen levels and his vital signs several times a day. We had to weigh him every day. If there was any drop in his weight or he didn't gain enough weight, we had to notify them, because that could mean that something was wrong.
Speaker 2:Were you working at this time? No, I was off, thank goodness.
Speaker 3:I was off and he was in and out of the hospital quite a few times. He had to end up going on oxygen at one point because his oxygen levels were just very low. He couldn't really figure out why he had two cardiac catheterizations in that time between the two surgeries, and then he had his second surgery when he was about five months old. We're just in and out of the hospital.
Speaker 2:You post a lot on Instagram so you keep it updated. It does feel like you always have something going on. He's had three surgeries total.
Speaker 3:His third surgery he was almost four years old. So we're coming up on two years since that one. So all he's had the three open heart surgeries and I think five or six I can't remember what I'm saying track five or six of the cardiac catheterizations, which is when they go up through the femoral artery and they use fluoroscopy and die. It's kind of like moving x-rays so they can see and get measurements and check things out and sometimes they do interventions. That way they place a spent like that one. They've bloomed arteries. A lot of people know it as angioplasty or something like that.
Speaker 2:And I saw something about stem cells. I think you were doing too right.
Speaker 3:So that is kind of where HeartWorks, which is the organization that we're raising money for the tournament, that's kind of where they come in and that's the connection there. So, coincidentally I mean so much of this story I feel like is serendipitous in a way we were diagnosed during heart month, during heart week, wow yeah, which is crazy, and it's part of why we're doing the tournament in February as well, because February is heart month. It was a birthday, no, no, just when he was diagnosed.
Speaker 2:Oh, and while you were pregnant. Yeah, okay.
Speaker 3:I don't know the exact dates. I think it's usually like the second week of February, so the dates exactly change each week or each year. Sorry, so I don't know what the exact dates are this week, but that's the Saturday, like right before it starts.
Speaker 2:And so he got this nickname, charlie the Champion, which obviously makes sense because of everything he's gone through. But where did that name come from and who gave it to him? And it stuck, right. Yeah, it's stuck, his little nickname, yeah, yeah.
Speaker 3:When we were pregnant. When I was pregnant after we had the diagnosis and we were starting to look into other families and social media and see other heart warriors online and get inspiration from that, that was like the first thing I did the day that we got diagnosed. I was like I know what this looks like in the hospital and I need to know what this looks like long term and outside of the hospital. So that day I went, I had that amniol, so I had to bed rest. Like the rest of that day we went home and immediately I hashtagged HLHS and I saw like happy, smiling kids that looked like they were living normal, happy, good lives.
Speaker 3:And I saw this little girl and she was in a pool in Hawaii and she was smiling and her name was Zola and they called her Super Zola, aw, and her thing was like superheroes and stuff like that and I was like, wow, this is what this can look like. She had also come to children's from Hawaii to have her surgeries and she had recently finished the second surgery. So I was pregnant at this time, so they're like about a year ahead of us and they were here in California the whole time for her surgeries and then went back home to Hawaii and there she was in a pool, smiling with her incision, and she just looked like the happiest little girl.
Speaker 3:It brought you a lot of hope it did and I was like I opening that, I was like what this can look like? That's because all I knew was these sick, super sick babies in the NICU. But anyway, we noticed that, like, for example, her and a number of other people that we found online, they had these little like tags or whatever that they would call their kids Liam the lionheart and Super Zola. And you know, they were like, oh, I'm gonna go and get a shave, maeve, and like all these different things like that. Oh, we need to. We need to think of something. We knew his name was Charlie already, so I just kind of tried to go off of that and I was like Charlie the champion, like that sounds good, it sounds great.
Speaker 2:Yes.
Speaker 3:Well, I just came up with it and it's stuck and it's with time, it's like with our good friends. It's turned into a thing with like boxing, like fighting, you know, fighting, fighting the congenital heart disease. Fighting has been a big thing we had. Their story is so crazy. Their youngest ended up being born on the same exact day as Charlie, which is insane because we both had the same due dates, coincidentally, and they both came three weeks early on the same day, so we ended up having like a joint birthday party for them. That was boxing thing was like round one when they turned one years old and he's got like these little red boxing gloves we always hang up. My husband has a tattoo that's like as a heart with boxing gloves and then you'll see the logo for the tournament.
Speaker 2:Yeah.
Speaker 3:Has. If I think it's hard to see, it's tiny towards the bottom, but it's like a heart in the shape of boxing gloves. That's so sweet.
Speaker 2:Does he know that? That's his name? Does he like? Yeah, he knows.
Speaker 3:Yeah, he used to go around introducing himself like that, like at the park or whatever. He'd be like. I'm Charlie the champion. Now that he's in TK, does his teacher call him that? No, no, now he's just like, he's just Charlie.
Speaker 2:But that's so cute. So what is the future for Charlie? I mean, he's now, he's in TK, he's finished his major surgeries, right, and so what is? What is the long term now? Look for you.
Speaker 3:So now when they give people the diagnosis, this diagnosis has changed so much over the years. You know it didn't even these surgeries didn't even exist until about 30 years ago. So in the past all of these children died, you know. It was just, it was incurable. And now that they've had these surgeries for a while, people are living until they're into their 30s, some 40s, with their original hearts.
Speaker 3:But and when we were diagnosed they just presented it as it's the three stage shirt the plan is there's three surgeries and then we hope he'll live as long as possible. And now, supposedly, when they diagnose people, they tell you upfront there's three surgeries and then you go to transplant. So we know that at some point in his life he's going to need to transplant. We hope that we can get him to adulthood before that happens, because obviously it's easier to get a heart from an adult than it is from an adult. Then it is to get from a child and it'll last longer and he'll be stronger and bigger and everything else, and then he doesn't have to go through that as a child who knows what medical will look like in 30 years from now Exactly.
Speaker 3:It's just I mean look how far we've progressed.
Speaker 2:It's incredible to see where we've come. So yeah, absolutely.
Speaker 3:And, like I said, because these, these things didn't even exist. This treatment plan that we have now didn't even exist 30 years ago and constantly they're making advances, advances. Which is part of why we're contributing to this research too is we hope that with time things will advance even more, and hopefully. I mean, it would be amazing if Charlie didn't need a transplant ever, but it's likely that he will, we just don't know when.
Speaker 2:So you've now organized this softball tournament, you and your husband. So tell me a little bit about this tournament why you started it, what is it going towards and how people can get involved.
Speaker 3:Okay, so the tournament was actually my husband's idea. He is a big baseball softball sports lover.
Speaker 2:My household, when I grew up, no sports, None that was like my first question when I was like talking to you. I was like so who do you like sports? She's like absolutely no, it's not me.
Speaker 3:My parents weren't, either of their households were not raised with sports. Yeah, but my husband very, very he it's just him and it is in his brother and they're very sports oriented. He always played baseball when he was young. He played a number of other sports too and then years ago in Burby, he's been playing in the parks and rec in Burbank for years I would say Probably at least 15 years or something. Yeah, and he started a softball team With a bunch of buddies we were newly married, so it's got to be quite some time ago and the friend that I mentioned At that time we were both working at Children's and he overheard us talking about work one day in a patient that we were caring for or whatever, and he and the other husband they started the team and he heard us saying Something about the pain team, the pain team, and he was like what are you talking about, the pain team?
Speaker 3:They were like oh yeah, the magic pain team. You know it stands for making aches go away in kids and they manage like chronic pain and Patients, pediatric patients, who were there long term in the hospital, and they're like that's it, that's the name for our team. So they were the magic pain softball team and if you play in Burbank you might know them. For many, many years ago, eventually that team broke up or moved or whatever. But now he plays on two other teams In Burbank. He plays on, I think, arrows I might be saying this wrong and bad news Bad news bears not gonna hold that again. Not bad news, not the bad news beers, the bad news bears. I think those are the two teams he plays. That's awesome. So he's been doing that for ages.
Speaker 3:Then we had our kids. Then our daughter In TK started playing softball. They him and another dad started a team way back when 2016 or something through the barbank parks and rec again and they were the fighting unicorns and they played For seven years I think, all through fifth grade. From TK to fifth grade they played and he coached and more coaches and more kids joined the team with time and Then the team broke up when they kind of graduated fifth grade. Then she joined another team this last fall for middle school. He's just like always, he's in it. He didn't coach this season. This was the first time he didn't coach for her and it was really hard.
Speaker 3:It's kind of nice for me because I'm like I finally had him in the stands with me, but it was hard for him. Yeah. But then our son he plays the East Valley and he plays baseball and he's played since he was Three, I think. He's now seven and a half. He coaches his team too. Okay, and pattern here. Yes, so it's a very baseball, softball sports family now. And the plan is actually for Charlie to start to play with Little League Burbank little league in the spring. He's gonna join a team with one of his good buddies. We had originally considered a team called Piper's pals. Yeah, I've heard of them.
Speaker 3:Yeah so they have a team for children with disabilities here in Burbank and they have a daughter, piper, who has some issues, and so we know them well and, like our girls, our girls softball team helped them out a couple times. So we had seen them play. We were originally considering having Charlie play for them, but then his friend reached out and was like hey, do you want to play? And we just thought that it might be a better Fit for him just to be with his buddy.
Speaker 2:So that's exciting, okay. So then you came up with this idea Hmm, what is the title of your tournament called the title?
Speaker 3:is Charlie's champs and it is a soft, basic softball tournament.
Speaker 2:I don't know anything about softball tournaments, so it's like a. It's like a one-day, it's a Monday. Events every third, right at.
Speaker 3:George is a park, yep, it's that all of park the city is letting us use all of, which is amazing. We have at least three fields booked and they don't how many teams sign up. We may or may not add the fourth field. Okay, there's three divisions that are that are available. There's a men's rec, a men's competitive and then a co-ed division. Typically there's like 10 players per team, but obviously you could have more if you wanted to team. It's a standard tournament format with Burbank softball rules, which can be found on the website or on the Burbank website. It's a round robin start, and so each team will play each other once, okay, and then, based on that, they'll get ranked and then it's single elimination after that to do to do all one day, so that'll just like go from game to game, to game.
Speaker 2:Yeah, okay, yeah, that's exciting.
Speaker 3:And you have food trucks coming and we have some businesses involved. Right yeah, we have the burnt to the. Burnt to a crisp truck is my favorite, I'm done.
Speaker 1:Yes.
Speaker 3:They're great. I love those guys. Their plan to come the snacks stands should be open. It will, it's this plan to be open, so there'll be like treats and ice creams and stuff you can buy for the kids. All families are welcome. There's also a company called Prince Street Pizza who's gonna be handing out samples of their pizza and it's really good, oh, awesome. And we're trying to find like a face painter or some sort of Somebody that could come and maybe do some fun stuff for the kids who might know some people, so I'll let you know after this.
Speaker 3:That'd be great, just to make it more like family friendly, and if you know, families are there kind of hanging out for a while while certain people are playing. The kids don't get bored, yeah, things like that. Um oh yeah. So we have a number of sponsorship options on the website. We're hoping to get sponsors from local businesses or larger companies or anybody like that. Anybody can just make a donation as well. Okay, but ideally we'd love if a company would sponsor a team. So far we have Bruise Brothers who are sponsoring their own team to play, which is awesome because I think quite a few of their employees already play softball and bourbon too, so that's great.
Speaker 3:So they donated generously and they're going to be their plane. Some of the other sponsors, if it's okay to mention? No, absolutely. My brother's business is called Boulevard BLVD. It's a commercial real estate company and he does stuff all over the country but mostly here in Southern California. So their sponsor, the karate studio where our kids go it's called SoCal Karate Kids and a good friend owns that. Their sponsor as well. There's my husband's brother owns, like a mobile gaming company called Magnetic and he has a really fun game called Art Heist. So their sponsor, and then one of the biggest ones that we have so far, is actually Jackson guitars, the guitar company.
Speaker 3:So the connection there is that Jackson guitars the original Jackson guitar was was designed by my uncle, who's Randy Rhodes. He was my mom's brother. He grew up here in Burbank, he was a guitarist for Ozzy Osbourne back in the early 80s and quiet riots and he happened to be inspired. At one point he flew on the Concord jet and when it goes like super fast to Europe or something, he flew on that and that inspired him and he was like sketching a picture on a napkin or something like that and the man I think his name was Grover Grover Jackson maybe, hopefully I'm not getting that wrong he saw the drawing. He worked for a different company at the time and that was the first ever guitar that he made. That was a Jackson guitar and he named it a Jackson guitar, so one.
Speaker 3:My uncle has a number of guitars but one of them is a Jackson, or maybe a couple of. I'm probably getting this all wrong. Anyway, so the company my mom is still in close contact with him and with the company. The company is donating a guitar that we can raffle off to earn money as well from the raffle tickets and that will also go to Heartworks. All of that money and somebody can win the guitar, which is amazing.
Speaker 3:So you have to be there, you don't have to show up to buy the raffle ticket. No, we're going to figure out a way we're not sure yet of you can buy tickets online and anybody can enter. I think we're going to keep it in the United States for now, because he does have a number of fans worldwide. Yeah, but we're going to keep it just to the mainland US states because we do have to ship it and that's probably going to be pretty pricey. But we are going to raffle off the tickets. I think $10 a ticket, but don't quote me on that. This is literally brand new information.
Speaker 2:Yeah, you were saying this is like they haven't even dropped yet, so this is like exclusive right now.
Speaker 3:Yes, it's just been in the works like the last literal day or two. So we don't even have anything to post yet on the socials about it, but we're working on all of that so you can buy raffle tickets.
Speaker 2:You can donate directly from the website, which we'll link in our bio of our podcast. You can show up and be there too, right? You don't have to participate, you can come and watch, right? Absolutely yeah. But if you did want to participate, how much was it for a team?
Speaker 3:I think it's $400 for a team, which really isn't bad because there's 10 players. It's only like $40 a person and they get a shirt. Right, you get a shirt, you get they're going to be a goodie bag with swag and stuff and you'll get, hopefully, if we get enough teams. The plan is for each team to play three teams, three games, which for $40, that's pretty good and you know that all of the donation, all of the money that you pay, is going for a really good cause. Yeah.
Speaker 2:So let's talk about Heartworks. So all the money you're raising, you're donating to Heartworks, and that is an organization that you've been in contact recently for some of Charlie's treatments.
Speaker 3:Yes, and the scenario with Heartworks is I think I started to say this a little while ago, I can't remember now Charlie was diagnosed in Heartweek that's what I was going to say in Heartmonth and a few days before he was diagnosed there was a post on Facebook by Children's Hospital and they said for the first time ever, children's is going to participate in a clinical trial with the Mayo Clinic to try using infant's own cord blood from the placenta, from the umbilical cord, and use it to inject it into their hearts to help with hypoblastic left heart syndrome. Wow, yes, this was three days before we were diagnosed, wow yeah.
Speaker 3:And I remember seeing like, so that was like fresh on your mind then, yes, and I was like I was doing co-work, like a bunch of people were sharing it. There was like emails going around at the hospital and I mean it kind of went in one ear and out the other. But I was just like, oh yeah, that's that really bad one, that's cool that they're doing that. Cool, yeah, yeah, yeah. And then three days later I just got chills on my body Right. Three days later we got diagnosed. Oh my gosh. First at the oh my gosh, I actually met with an old man my baby. He's like I already don't know a perinatologist. Then we got really lucky that we got into children's pretty quickly for cardiology diagnosis. So it was like confirmed within 24 hours or a little more. And when we saw them I was like, well, what about that new study? What about that new stem cell trial? And they're like, what, how do you even know about that? I'm like because I work here.
Speaker 1:I saw the email.
Speaker 3:They kind of threw them off, but so children's participated in and is still participating in this clinical trial. The organization that started it is the Todd and Karen Wannick Family Program for HLHS at the Mayo Clinic and then they started at this consortium. So there's a number of hospitals around the country who participated in this clinical trial. Heartworks is the fundraising arm of the Mayo Clinic, so they're the ones that like get the donations and put it to good use for the researchers and the doctors to do what they need to do to do this research. They do a lot of clinical trials. They do this umbilical cord blood collection clinical trial, which we were a part of for Charlie. They do genetic investigation clinical trials and then, a really cool thing, if you go on their website, you can see some of these news articles and things that they're doing. They have a bioengineered cardiac tissue clinical trial. So what they're doing is they're testing the feasibility and safety for autologous that's like cells from your own body, the skin cells and then they're manufacturing those skin cells into cardiac cells. They're changing them. They're changing the skin cells into heart cells Wow. And then um, or of cardiac lineage and those cells should would be delivered into the heart muscle as well as the cord blood ones were, before you go on their website and you can see them with these cells, and the cells are beating like actual hearts.
Speaker 3:Wow, it's incredible to see. That's crazy. It's crazy. So I mean, how amazing would it be if they could take Charlie's own skin and turn it into his own heart, if he could have transplanted with his own heart someday in the future? I mean, I know it sounds unbelievable, but 30 years ago these children didn't even survive. There was no hope for them. Yeah, and another 10, 15, 20 years, who knows? Because with transplant comes so many other issues and side effects. You know, you're basically people think like, oh, you get a heart transplant, you're cured, you're better, yay, but transplant comes with with its own set of complications and issues too, because of rejection and all these other things. So getting a heart from yourself if that was even possible, something to that tree, that's crazy.
Speaker 1:Right.
Speaker 3:That would be amazing, wow. But I mean even just trying to find out, like genetic investigations of why these things happen. You know, matthew and I both have a cousin on each of our sides of the family that has a co-arctation of the aorta, which is also a left sided heart condition. So it seems hard to believe that there's not some sort of genetic connection there that would cause this to happen. And you know, with more research and stuff, like, maybe we could find out why or how to prevent these things from happening to other people.
Speaker 3:You know, and I'm that person like with a nursing and a science background, I'm like I need to know why, why did this happen? Like how did this happen? How can we keep this from happening from other people and what can we do to help other people not have to go through this and have their kids suffer like Charlie has had to suffer? So anyway, we did get into that stem cell trial and they did collect the cord blood when Charlie was born and he had the stem cells injected into his heart of his own stem cells in the second surgery and then again into the into his heart for the third surgery. So when he had it at the second surgery he was like the fourth child at CHLA, I think, to have it done, something like the 12th or 14th in the nation, if I'd ever had that done. So I mean it's just it's another thing to give us hope. I don't know that it is going to even make any difference, but the more people do things like this, then the more hope there is for children like Charlie in the future.
Speaker 2:So this is a really important organization. They're doing a lot of great work, so I really hope you're getting those donations. What was your goal and do you know where you're at right now?
Speaker 3:Yeah, so our goal initially was 10,000. The last I checked we were up to 8.7. That was yesterday maybe, so I think we've gotten a few more and we're probably a little higher than that. We actually increased our goal to 15,000. Do it, girl, because we're like well, we're doing really good. We still have like two weeks.
Speaker 3:We don't want people to stop donating. Hopefully we didn't get people to stop by doing that. I don't want to sound greedy or anything. No, that is fantastic. I mean, the more the better, honestly, and we've gotten so many donations from friends and family and it's amazing. But we really need teams and people to play at the actual tournament too, because we really just want it to be a success and we hope that we can make it an annual event and with time we can get the word out even more and more teams and hopefully even add like a kids division. When Matthew said he wanted to do this, I was like what do you want to do for adults? We know so many kids who play so soft and bossy. Who cares about the adults and get the kids in there? So hopefully, with time, it will grow more and more. When is the?
Speaker 2:deadline to register for teams January 27th. Okay, so it's coming up. Everyone needs to go register and donate. We're going to link all of that in our bio and in our captions and I'm really excited to see this day and see the teams. What time do you guys start? I think 8am. 8am until very long.
Speaker 3:Until.
Speaker 2:Well, it depends on how many teams we get, but hopefully it will be a full day. That's amazing. Well, thank you so much for coming on and sharing your story. Talking about Charlie, I can't wait. He'll be at the tournament.
Speaker 3:Yes, he's going to pull the raffle ticket for the guitar. He'll be there. I don't know how long he'll make it. That's a long day for him, yes, but he'll be there at least part of the day.
Speaker 2:Okay, well, I wish you the best of luck and I hope that you reach your 15,000. So, if you're listening, you need to go donate. Go to the link in the caption of the bios and help support Charlie. Yes, thank you so much. Thank you, guys, for listening and I'll see you in another episode.
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