Mocktails Or Messy
Mocktails Or Messy
#52: Woodstock, Car Escapes, and #IPEX Advocacy with Missy Ramirez
When a mother's intuition conflicts with medical opinion, lives hang in the balance. For Missy Ramirez, trusting her gut during her son's mysterious illness ultimately led to uncovering IPEX – an extremely rare autoimmune disorder affecting just 1 in 1.6 million people worldwide. Behind her N95 mask (worn to protect her immunocompromised son), Missy shares the harrowing journey from that first emergency room visit to becoming a powerhouse advocate for bone marrow registry diversity.
Unlike many immune disorders that weaken defenses, IPEX sends Jax's immune system into overdrive – a "Formula One race car" response that attacks not just infections but his own organs and tissues. The only cure? A blood stem cell transplant from a perfectly matched donor. But therein lies another challenge: patients of Latino heritage like Jax have less than a 50% chance of finding a compatible donor, compared to the 85-90% match rate for Caucasian patients.
Through tears and laughter, Missy reveals how this diagnosis transformed her into a fierce medical advocate and community organizer who has helped register over 7,000 potential donors to the Be The Match registry. Her philosophy is beautifully simple: "The universe provides what you give out." Despite watching her son fight for his life multiple times, she maintains infectious optimism and determination to help not just Jax, but countless families facing similar battles.
Between sharing wild stories from her pre-mom life (escaping a suspicious cab driver and surviving Woodstock '99), Missy delivers a powerful message about becoming a "walking hero" through a simple cheek swab. Text "Jax Ramirez PA" to 61474 to get your home testing kit, follow their journey on social media @BeTheMatchForJax, or simply share their story to help create a world where everyone has an equal chance at finding their lifesaving match.
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I bought tickets to Woodstock 99. People were wildly unwell. They had knocked over the Port-A-Johns.
Speaker 1:They were sliding through the Port-A-John water I hit a red light and she was like yapping in my ear about whatever it was and I was like you know what Sounds like we're done here? And she's like what do you mean? I said you're out of the wedding. I was like we got to get out of here. So I jumped up front, pushed out the window with maybe a foot, jumped out, got her out and we sprung the joint Welcome to Mocktails or Messy.
Speaker 2:This is Ryan Frankofsky and Kelly Musgorski, and we have in the studio today one of our favorite. I don't want to even give away the details about how we met, but it's Missy Cuban Ramirez. Cuban Ramirez, just Ramirez. Let's be honest, missy Ramirez, she's hiding behind the mask. Do you want to give us a little insight why we have to be in the mask today?
Speaker 1:Yes, so my son Jax has a pretty rare autoimmune disorder called IPEX and I stay masked and we stay generally isolated to protect him from any actual illness or virus.
Speaker 2:To be honest with you, Well, thank you for making the time to sit down with us. We are super excited to educate people on your son, jax, and his you know journey, but also we want to learn a lot about Missy today. You know the mom behind the operation, so thank you?
Speaker 1:Yes, right, I love that. Yeah, nobody ever asked me about me, so this is fun.
Speaker 2:Oh, for sure, and you're a character. I've followed your TikTok, I've seen your Instagram reels. You definitely have that je ne sais quoi for the camera.
Speaker 1:Oh, I like that too. I like a little gassing up while I'm here.
Speaker 2:You know what I'm saying. We wish we could see what you look like, but for privacy reasons and for your son's autoimmune disease, we want to make sure that you're protected. So thank you for making the time to come into the studio protecting ourselves. Next time we will have our masks as well. It's cool, it's good. Yeah, we're cool. We're good Because we could grab them too.
Speaker 1:No, I'm totally cool. I'm totally cool. I spend all my life with everybody who is masked or isn't masked, but as long as I'm protecting, I feel good about it.
Speaker 2:Yes, yes, and that's an N95 mask too, it is See, I know my stuff.
Speaker 1:You do, it's also recyclable. That's important for me.
Speaker 2:Ooh, I like the sound of that, especially with all these plastic and well, there's some glass in there.
Speaker 3:You know, We've got mostly glass and cans here that we can recycle.
Speaker 2:Yeah, yeah. So, Kelly, what are we drinking today?
Speaker 3:This is the Dirty Pelican Spicy Margarita. Dirty Pelican Spicy Margarita. I have a little bit of tequila in mine.
Speaker 2:Yes, you got the Alto. You got the Alto, and same with Missy. How do you like this Dirty Pelican Spicy Margarita?
Speaker 1:I love it, especially after a long day of work. You know what I'm saying it's the perfect amount of spice.
Speaker 3:It's not too spicy.
Speaker 2:No, it's perfect. Yes, and I'll give you a little quick rundown. I'm drinking the Dirty Pelican Spicy, skinny Margarita and I'm adding in my tequila alternative Trajo Spirits. You remember Trajo? He's the actor. Oh, I do. I mean, you know Trajo from movies and shit. How could you not? He actually got sober about 10 years ago. I'm pretty sure. I don't want to like be quoted for that, but he started this, like you know. Zero proof tequila alternative. It tastes amazing. I got it. I want you to try it at the end of the.
Speaker 1:Oh, I will, I would love to yeah.
Speaker 2:Maybe we'll do a shot.
Speaker 1:Let's do it yeah.
Speaker 2:Yeah, because you know I'm a mock tailor. It's been over a year, but you know enough about me. Let's go into, let's dive deep into Missy.
Speaker 1:Yeah, let's do it. Yeah, but also congratulations on that.
Speaker 2:Oh well, thank you, let's cheers to that Cheers to that Hi. Nick.
Speaker 3:Yeah, let's fucking go. Yeah.
Speaker 2:Okay, so we have some messy questions for Missy, just to get to know her. We're going to have a little bit of fun today. Yes, we're going to start off with a little bit of educational, funny, messy questions for Missy.
Speaker 3:You can't read these, right these are big enough.
Speaker 2:These are big enough. She makes fun of me. She's always been on my ass I need to get glasses. I had them, I lost them. Do you have glasses?
Speaker 1:I have contacts like I can read that barely. You know what I'm saying, so we're all right we're all doing good.
Speaker 2:Yes, yes, no judgment here, missy, what we're gonna just dive in okay what's the most trouble you have caused at a wedding party or an event so that's a great question.
Speaker 1:And it was actually, I guess maybe it was like pre-wedding and it was my own wedding yeah. And I had invited some folks to be part of my wedding party.
Speaker 2:Yeah.
Speaker 1:And frankly they were on my last damn nerve and I said they were on your last damn nerve.
Speaker 2:They were. What were they doing?
Speaker 1:Everything was a problem. The dress was a problem, the shoes were a problem, the color was a problem.
Speaker 3:My hair was a problem. No, no, no no, that's right.
Speaker 1:And then I was driving on 19. I'll never forget it. I hit a red light and she was like yapping in my ear about whatever it was and I was like you know what sounds like we're done here. And she's like what do you mean? I said you're out of the wedding and she was like you can't be serious. I was like, oh as hell, I am serious, you're done. I was like if you want to read, I'll welcome you, but you're done. And she's like I'm not reading. And she didn't come to the wedding.
Speaker 2:And that was that we haven't spoken to her. Can we say that, yeah, okay yeah, fucker, what's up with that?
Speaker 3:listen good for you, but I feel like you shouldn't have been like having to drive around that day. Well, it was, it was pre.
Speaker 1:It was pre-wedding, but like I don't, care. We were like planning and all the things and she was just like angry elf about everything and I was like we're done with your energy you know what I mean.
Speaker 3:You did the right thing. You did the right thing, yeah, yeah, yeah, yeah. So that was like it was like we're done with your energy. You did the right thing. You did the right thing.
Speaker 1:Yeah, yeah, yeah, yeah. So that was like, it was like a whole thing you know what I mean.
Speaker 2:It's fine If you could delete one regret from your life. What would it be, missy?
Speaker 1:Easy. I was offered a job in Hawaii twice and I turned it down. Yeah.
Speaker 2:Salary wasn't good.
Speaker 1:I don't know. I think I was like. You know, when you're born and raised in Pittsburgh, you sometimes stay in Pittsburgh. Yeah, yeah, yeah, yeah, and we think about that my husband and I a lot, Because he was like, really devoted to thinking we were going to buy, like this little house on stilts live off the land.
Speaker 2:He was going to raise chickens we were going to eat pineapple.
Speaker 1:I was gonna like be an educator and we were just gonna be like real you know beachy vibe, and then I said, no, we talk about that. We talked about that this weekend it's just like you know what I mean.
Speaker 2:It's like that thing, like a what if?
Speaker 1:and then, like full circle, we would have been closer to some of jack's's treatment in California which I also think about.
Speaker 2:It's still a five-hour flight, it is, so I mean, let's just think about it, you're five hours from Pittsburgh.
Speaker 1:That's a great perspective. Thank you for that. Yes, I'm just giving you some insight.
Speaker 2:Thank you, yeah, because as much as it feels so close, you're like fuck it's still five hours.
Speaker 1:Yeah, yeah, yeah, yeah, so yeah.
Speaker 2:But I like that you, you know, still talk about it because whatever it's magical, it could have happened, but you know you're with your family. I mean, there is something about the Berg. It might not be Hawaii.
Speaker 1:It might not be Hawaii.
Speaker 2:But you know what.
Speaker 1:The Berg has treated us so well, the Berg treats my family, in particular because of Jack, so well, so like.
Speaker 3:I got to send some love to the black and gold.
Speaker 2:Yes, and it does suck you back in. I will say I was gone for 10 years and I came back and so was he. She didn't think she would come back.
Speaker 1:Well, my brother came back too. You know what I mean. Oh my God.
Speaker 2:Can we quickly touch before we finish these questions? Oh my God, can we quickly touch before we finish these questions? I really love your brother and his wife and, like when I see TJ Cuban on Facebook, I'm like how the F does, how have I not met you before? I know I mean now full circle. I'm like you have the same energy. You might be cooler, he's pretty fucking cool. But I don't know, girl, you fucking walking down the street and being like what's up, I'm like is this a bitch like a celeb? She gives me main character energy.
Speaker 3:Yes.
Speaker 1:We're hanging out more often.
Speaker 3:Back story for the listeners we graduated with Missy's brother.
Speaker 2:Yes, TJ Cuban.
Speaker 3:TJ's wife.
Speaker 2:And they were two of the nicest people in high school. Oh my god, they ended up together, so why wouldn't say the nicest?
Speaker 3:they were so nice, they were the funniest I know I have no I love them.
Speaker 1:I'm just thinking like oh, they could probably answer some of these questions. I know, you know what I'm saying.
Speaker 2:I know, I know. So what is the most awkward, hilarious celebrity encounter?
Speaker 1:Oh gosh.
Speaker 2:Because I know you've met a couple with doing work for your son.
Speaker 1:Yes, so well. So sometimes main character energy kind of gets in my way. And so we were so the Pittsburgh Pirates set us up. Every year they give us a charity box for Jax right at the river so he can see the boats go by.
Speaker 2:That's amazing.
Speaker 1:Oh yeah, and we get to pick a game and we always pick like the low-level games, right, like we're like. It's not like high-impact, high-energy.
Speaker 2:Right.
Speaker 1:And so they give us this whole box and we had all this food they feed us like there's 20 of us, there's four, okay. And so we had all this extra food. And I looked down and Charlie Batch is down there. And Charlie Batch is with a bunch of kids I think he might've been with Best of the Batch, his program and so I'm sitting there with my husband. I was like, hey, look, it's Charlie Batch. I'm like, hey, charlie. I was like I have some extra food up here, do you want it? And he walks over and he's like, yeah, that's great. So there I am loading hot dogs and hamburgers on paper plates and I'm handing them to Charlie and as we're going, like it's like we're age old friends, and I was like man, you had some great runs on the Steelers, you know what I mean? And we're like hitting it back and forth.
Speaker 1:And then we leave and all the kids are now eating hot dogs and hamburgers which I felt really good about that and we leave and my husband was like what was that? He's like you're just like, hey, charlie, here's some hot dogs on a paper plate. And I was like, oh, that was weird, huh.
Speaker 3:No, we love that. Okay, well, that's good, because then I messaged him on Instagram.
Speaker 1:I was like hey, you saw me at the pirate game. I hope it wasn't weird. I sent you hot dogs and hamburgers, which probably made it weird. No shame.
Speaker 2:No shame in your game and you have that like you got like the real, like authentic. You are 100% yourself, which I love. That about you I can find that out from your friend who introduced us, and even just like following your social social media. But what's the time you thought this would be fun and it wasn't I was actually telling this story today.
Speaker 1:So, uh, I was super into mute, I am still super into music and I love just being out at concerts.
Speaker 2:Good, vibes good energy right.
Speaker 1:So I bought tickets to Woodstock 99.
Speaker 3:Do you know anything about Woodstock? I do know.
Speaker 1:Yeah, it turned wild.
Speaker 3:She probably doesn't. I don't. That's why I'm being quiet.
Speaker 1:So Woodstock 99, it was in New York, it was three days.
Speaker 2:They packed us in.
Speaker 1:They inflated every price. People went ballistic. People were starting fires. So I'm standing there watching like I don't know the Red Hot Chili Peppers. They get pulled off stage. I turn around, there's fires all around us. Okay, people are blowing things up. People were unwell and I was like what are we going to do? Unwell, people were wildly unwell. They had knocked over the port-a-johns. They were sliding through the port-a-john water, which I'm not sure everybody was thinking through that yes.
Speaker 2:Yes On purpose?
Speaker 1:Yes, and so my friend and I were like this is it, we're done. And you know, I don't have a cell phone, it's like 1999, right. And so we had to walk miles to get out of there. We couldn't get back in. All of our stuff was in a tent miles away. And so I did what any good thinking like 19 year old would do I ripped a piece of the woodstock wall, we hopped in a truck and we headed on home and so I show up.
Speaker 1:I'm filthy dirty and my mom was showed up. She saw us pull in early. She opens the garage door, hands me a towel and was like you're not coming in here, you're discussed and you're going to like change down here and you're going to be done. It was the craziest experience, and so then the documentary came out and I was watching it. I was like mortified that I was there.
Speaker 2:I was like it looks even worse you know when you're living it and then you rewatch it.
Speaker 3:Yes, I'm going to watch it now. The.
Speaker 1:MTV poll, like where the guy sat. They knocked it down. People were so angry on how much everything cost and how much people they like jammed in that like everybody's energy was off and it was bad.
Speaker 2:I know, know. I mean I remember seeing a little bit of that odd documentary. I wasn't there, but I do feel like it's a story to tell.
Speaker 1:You saw that shit like firsthand I got knocked over in a mosh pit for throwing rage against the machine and I found 20 bucks oh wait, say it again.
Speaker 2:Yeah, so I got again.
Speaker 1:Yeah, so I got knocked over, so again mad energy Got knocked over in a mosh pit while we were there during like a rage against the machine, sort of like moment Boom hit the ground. I was like, oh my gosh, here's 20 bucks, and 20 bucks at Woodstock was like that was getting you a water.
Speaker 3:That's it, but it was getting you a water.
Speaker 1:That's pretty good, like 25 years ago though but yeah, some people die in mosh pits. But you found 20. I found 20 bucks, that's good. And we made it down to the mcdonald's in rome, new york, and got a water. I called my mom from a pay phone and I was like I called my mom from a pay phone and I said mom, it's not going well. I was like I think you're on the news. She's like have fun. I mean seriously, it was so bad.
Speaker 2:You guys are fucking hilarious. The Cubans leave it to the Cubans. Have you ever accidentally ruined a relationship between friends or family?
Speaker 1:Well, I mean to be fair, full circle, full circle. That first story, like I never talked to like bestie, for the rest he turned never again thank god when I kicked her out of the wed. You know what I?
Speaker 2:mean, oh, you did, yeah, like when I kicked her day over.
Speaker 1:No, not the day of maybe like a couple weeks before. Good for you may have had the dress and she may have had to pay for it, but I mean, it is what it is. You know what?
Speaker 2:I mean. I mean, she does not deserve to treat her like bride friend to be. No.
Speaker 1:And she called me a bridezilla and I was like sis, I'm not a bridezilla, you know what I'm saying, I'm just tired of dealing with your mouth.
Speaker 2:Yeah, skrrt. I mean what, Honestly, you pick self-respect over putting up with that bullshit?
Speaker 1:I was petrified for the day of because I didn't want to listen to it, so I was just like we're done.
Speaker 2:Good for you. Cut the cord, be done, and you don't have any animosity from that.
Speaker 1:You know what? No, I'm actually like you know what Wasn't meant to be Toodaloo. You know what I mean.
Speaker 2:Toodaloo Deuces, yeah, peace. I think we all need to educate some people Like even like old relationships or friends and family, just because you're blood, like if they're not serving you At this stage of your life, in our 30s, 40s, 50s, like get rid of them okay.
Speaker 3:So, missy, it was great to get to know you a little bit. That was fun yeah, um I think what we're all here for and like. More importantly, we want to talk about jacks, yeah let's talk about jacks we're gonna get into those questions for you. Can you share more about jacks's journey from being a healthy baby to being diagnosed with ipAX? What were some of the early signs that led to his diagnosis?
Speaker 1:Yeah. So that's a journey. That's a journey of a thousand miles. So Jax was born happy, healthy, checking all the boxes. We were brand new parents, like living, like we thought we were living our best sleepless lives, you know, and fast forward to sleepless lives, you know and fast forward to it was Thanksgiving and he was two and a half. I had just had my son, lincoln. So Jax is two and a half years older than him. Lincoln was a newborn and I thought Jax was acting off but I was like he had never been sick before. So like, let's, let's, let's live this out. Maybe this is our first time and I had, I remember so vividly, calling the like the pediatric person on call, because it's a holiday, of course.
Speaker 1:And they were like oh, you know what, just like live it out, do the vaporizer. You know, keep them, keep them well like, keep them like comfortable. And I thought, okay, but this feels weird, this feels different. And so next morning it's now Black Friday and we were going to go get a Christmas tree and I remember I said to my husband, Pete, I was like something's wrong, like this isn't right. So I put him in and we but it was a skull blanket. I love sugar skulls, like I love that. Yeah, right, so he's wrapped in this sugar skull blanket.
Speaker 1:He had his little beanie on and they saw us in the waiting room and they came out to get us and there's like tons of kids there and they got us first. And I thought that was weird because we had just shown up and they were like, hey, we, we want to check your son's blood sugar. And I was like what do you mean? And they were like yeah, we think he might have type one diabetes. I was like no, he doesn't. I was like we are unwell here, like this is not how this adventure is going. I think he has a virus.
Speaker 1:Turns out, they put us in an ambulance and sent us to Children's Hospital. I was there, he. By the time we got there he ended up in a coma because they thought he had almost they had to protect swelling of the brain. His body was giving out on him and so that was our first adventure into finding out eventually that that was all caused by ipex. So he resulted in having type 1 diabetes and we had this little newborn at home. We ended up spending like 14 or 17 days in the hospital.
Speaker 1:I'm like sleeping on a children's hospital and they're like floor pull out bed with a nursing a newborn and taking care of a two and a half year old who, quite honestly, felt like two newborns, because we already had, you know, we had to learn how to take care of Jax now, and then we had Lincoln, and and then after that the ball just kept rolling in very bad ways for him. That resulted in so many hospitalizations. I watched him almost lose his life so many times, a majority of his time, one of the times he was in a coma at the hospital with him and those beeps, I think just really it's a lot for people to manage, and so you know, fast forward to all of those things.
Speaker 1:we had finally met some docs and they were like hey, this doesn't feel good. And I said, right, everybody's been telling me it's bad luck. I was like this is way more than bad luck. Folks Like we need an answer, and that's how we ended up finding out that he had IPEX. But that was a long time to go before we got there.
Speaker 2:Do you have any blame for people not being able to identify that sooner?
Speaker 1:I think that I don't have blame that they didn't find it. I have blame they didn't listen to me. Because all along I was like this is more than bad luck, like I have two kids now and one responds far differently than the other, and I kept asking, like people that had kids with type one diabetes, I was like, is this how they react when they're sick? And they're like no, no, they're sick and they're like no, no. And I will never forget a medical professional had said to me you know, sometimes this kind of thing happens type 1 diabetes, when a really emotional, traumatic event occurs. And I'm holding Lincoln as a newborn and I was like what are you saying? They're like, you know, like the birth of a sibling, and I was like, wow, you just put in a new mom's head that you're my son, my older son is sick because I had a baby, and that is just yeah, we.
Speaker 1:That was my first venture in understanding that I need to be a really big voice and a really big advocate in my family's life.
Speaker 2:Absolutely.
Speaker 1:Yes, I mean, we've heard navigating the healthcare system can be very challenging. Yes, and, and you know, teaching hospitals are awesome because it teaches folks how to be great professionals, but also you have to navigate that piece you know when you see your son dying and they're like no, no, we're not, we're, we're, no, we're moving on and we need to get some folks in here that are skilled and you have to trust your gut.
Speaker 1:At the end of the day, I tell everyone, even the kids, anybody that I come in contact with trust your gut, because it's probably right, and had I not, I think I would have lost Jax a long time ago.
Speaker 3:I do think, like a mother always knows. So could you go into a little more detail about IPEX and its daily effects on Jax's life and some of the symptoms and challenges he faces?
Speaker 1:Yeah, so IPEX is a really rare autoimmune disorder. It's life-threatening. One in 1.6 million people have it. I have it actually, and so the neat thing about science is that you know women have two exes, men only have one, and so his shows the symptoms, my ex wraps it up and is quiet, so I won't ever be ill or unwell, and in fact, had I not had boys, I would have never known I had IPEX.
Speaker 2:Right.
Speaker 1:Yeah, and in fact it's in most of the females in my family is what we've found out, so and Lincoln does not. Lincoln does not have IPEX. Yeah, so we had to get him tested to see one if he had IPEX and two if he was a match, because the only known cure is a blood stem cell transplant or a bone marrow transplant, and so we had to get him tested for that. And I always say I can't celebrate, he doesn't have it, because I mean, how can you celebrate it?
Speaker 2:It's just like check the box we don't have to deal with. That is really what that is.
Speaker 1:But yeah, ipex is funny because it creates all of these autoimmune disorders. So a little tiny virus is really exacerbated for Jack. So he's not under like people think that he has no immune system. He has like Mach 10 race car immune system. He's like Formula One. So once something comes in, it's like I'm obliterating that and whatever it's in his way.
Speaker 1:So it's going to be organs and tissues and things like that so that's why he continues to acquire autoimmune disorders, so little viruses can have really long lasting, big impacts. Because he has myasthenia gravis too, which affects the eyes and the nose and the breathing and the chewing and all of the things, and usually that's in the elderly, not a five year old, because he was diagnosed with that at five, so it's just been a journey.
Speaker 2:And you still remain this high, optimistic, positive mother, positive psychologist, if I may say, and just like you really do really shed this bright light that people want to be around you and this is something that you need to educate everyone about, and this is I mean, this is part of your being. I could feel it.
Speaker 1:Yeah, you know it's about the universe provides. And so what you give out into the universe, you're going to get back. That's what I really believe. And so the you give out into the universe, you're going to get back. That's what I really believe. And so the more that I can be out there and I'm not going to just be an advocate for Jax, I'm going to talk about the disparities on the bone marrow or the stem cell registry. I'm going to talk about the disparities in the care that we've received, because my little story can impact many, many people. We've saved so many lives in the work that I've done so far. You know we've registered over 7,000 folks in Jax's honor.
Speaker 1:I get countless calls that my cousin signed up for Jax, but he got a call that he's a match for somebody else. Tj was a match for somebody in Florida. He ended up not going the whole way because they found somebody else that was a closer match. But again, lives are being saved. And so you know what I'm going to put out. I'm going to get back what I put out. And so if I can put out grace and love and support and advocacy for other families who are experiencing the heartache I have, then I'm going to get that back twofold.
Speaker 3:Right. So, to go into it a little more. What does Jax need to undergo for the bone marrow transplant and why is finding a match specifically challenging due to his Latino background?
Speaker 1:Yeah. So the registry as it stands today is not incredibly diverse. So if you are Caucasian 85, 90% chance you're going to get a match. Anybody else like Hispanic and Latino and that's 100% Hispanic and Latino you have less than a 50% chance. Black Americans less than a 30% chance, and it's all because there's not enough diversity on the drive as it stands. And so my goal is to one find a match for Jax, but, two, give folks a voice. Every person should have a match, right. Every person should have a second chance at life, and they deserve that as humans. And so I'm in those underrepresented communities educating them on why they should be on the match, because there's a lot of medical trepidation for those underrepresented communities, right, they have been treated poorly in the past, and so it's getting them to understand you're joining to help your community, you're raising up your community, you're saving your neighbors, you're saving your family members, you're saving other communities like yours, right? So get on the registry and save yourselves, because it's all about saving ourselves.
Speaker 3:Yeah, yeah, I mean you're talking about how like important community is. Are there any like uplifting stories for the community? I know it's a small one right now, so many yeah.
Speaker 1:So our community is really, really big. So we've held events all over the country, including Puerto Rico and Mexico. But even just for my family, like the Pirates I talked about, they give us a charity box every year. They do so much for Jax. They send him like Christmas cards and gift cards and little presents. I mean, who are we? You?
Speaker 2:know what I mean. That's what I'm always like who are we?
Speaker 1:Mark Reckie. We met Mark Reckie at one of our events and he was like you know what I can do? Sid the Kid, we're going to get him a jersey. So he sent Jax a jersey. Jax's face, like it, showed up. We got home from California because I entered Jax in a clinical trial to help save him, because we haven't been able to do anything else otherwise. So this jersey shows up when we come home from California. He was just beaming because it's just us in essence, right, but like all of these people do these beautiful things, it's just little drops in a huge bucket of hope and love. I'm part of the Rotary Club because, again, giving back is really important to me. I ask a lot of people to do a lot of things for me and so giving back is part of that. But we took over a bar, actually in my town and all the Rotary members were.
Speaker 1:I was a bartender and we were servers and all the proceeds went back to Jax. I mean, these people are coming up with these events to help spread the word and get people on the registry and and fundraise for us to be able to go to California and go to Stanford. Well, Lucille Packard Children's Hospital will be part of Stanford University trial, just to help do something. And they're like, but it's just little. I'm like it's not just little. These are huge acts of kindness.
Speaker 2:Absolutely. And what was the bar that you guys had? Shoebrew, shoebrew, okay, shoebrew, okay, yeah, shoebrew right in our town of Zillianople.
Speaker 1:We overtook it. We were all the servers and bartenders and everything.
Speaker 3:I loved it.
Speaker 1:I was like oh, I can do this. I loved sitting behind that bar talking to everybody hearing their stories. They were excited to see me you know, serve them a little hot pretzel and a cocktail.
Speaker 2:Definitely that energy is infectious.
Speaker 3:Yeah, it was fun. Yeah, what would you like to say to listeners who might be inspired to join the Be A Match registry or support families like yours?
Speaker 1:I would say never turn down the opportunity to be a walking hero. You know, I think that if you can give the gift of life, why not? And it's such an easy concept. It's the swab of a cheek, and when you hear bone marrow, it's now really about blood stem cell and that's just like a plasma draw.
Speaker 2:That's just blood.
Speaker 3:They're just taking blood and taking the plasma from it. That's all it is.
Speaker 1:Yeah yeah, they're taking the stem cells from it, so it goes through a centrifuge. You know it's like over the course of a couple hours. Be the Match is now an MDP. They pay for everything. They'll pay for your dog sitter, cat sitter. They will pay for all your food, room and board, if you have to go somewhere, if you have to do anything overnight. No stone unturned to help save a life.
Speaker 2:Why not? That's amazing.
Speaker 1:Yeah, it's an incredible thing and you know you could get the call. You may never get the call. I know somebody that saved two lives personally, I mean that's like that's the gift, right.
Speaker 2:That's it. That's, that's the, and your brother was going to as well. Yeah, Somebody he was.
Speaker 1:He was. He went through the whole kit and caboodle because they do a physical for you, they do some blood labs just to make sure you're healthy enough to to donate, and then ended up it was a female from florida and you know it really comes down to a lot of nuance and just this one lady had an edge on tj.
Speaker 2:But they said to him you know, we might call you back if this doesn't work now let me ask you this why were the two matches for Jax not what are your? You don't really know why they weren't able to follow through.
Speaker 1:I don't, I suspect. So I suspect that they were just became largely unavailable.
Speaker 1:So, one of the events that we did. We were so fortunate to be able to do the shell plant in Beaver and that was a huge diverse opportunity. There was people from all over, from Puerto Rico, from Mexico, from the Dominican, from Guatemala, and they were all here working at the shell plant. And the lawyers when I was talking with them, they were like we don't usually do this. I'm like but come on, think of all the lives you can save, they let us in and the company.
Speaker 1:Then they gave them all bonuses and it was a huge event. We had over 700 people join and I think by the time their name hit they probably were left the United States and we couldn't find them.
Speaker 2:Okay, because we want to be pushing this message, we want to get involved. We want to be pushing this message, we want to get involved. We might not be a match, but why would we not be able to, you know, get involved and test ourselves? For and you know being like an advocate for you know, not only Jax, but, like you said, there's. So why not give an opportunity to save a life?
Speaker 1:And it's really so easy, and I think, even just sharing the story. So that's what I always say, if nothing else. If you know, people are always like needles. I'm afraid of needles, I'm afraid of this, I can't do this, and I'm like listen, share his story, talk about it, because he's not the only one that needs this.
Speaker 1:Right. And so if it becomes just this commonplace thing where we all were just like, oh yeah, we can do that, or oh yeah, I know somebody who might be able to help in this way, you know six degrees of what is it? Six degrees of Kevin Bacon, somebody knows somebody.
Speaker 2:We're always going to be able to help somebody, you know exactly.
Speaker 1:It's just about spreading love in the word.
Speaker 2:Now tell us what you are. You go ahead, kelly. Go ahead, tell us what your messy debauch, since it is in line with, mocktails are messy it is what's your messy is debaucherous, crazy drunken college story for us all right.
Speaker 1:Well, I talked about this one today too, because I was like running it by a few people. You know what I mean. I was like is this good? So we before ubers were cabs. Little known fact, right.
Speaker 3:And so I was of the cab era.
Speaker 1:And so I used to take cabs all over the place, and so I took a cab with my friend down to the South side, and then we were heading back to Oakland to just continue the day.
Speaker 2:Right, you were a pit girl.
Speaker 1:Yeah, pit is it H-T-P. Oh shit, pit is it, pit is it.
Speaker 2:H-t-p. Oh shit, yeah, yeah, pit is it, pit is it. Let's fucking go yeah let's go, so anyway.
Speaker 1:So, heading back, and I felt like the cab driver was taking a long way, a long way around, and I thought this is weird, but again, there was a lot at play. So we end up circling around and he pulls into a driveway that was not our final destination and he gets out and locks the doors and we were like no, no, no, no, no, no, no. Yeah, so don't worry, it's a great ending.
Speaker 2:So he leaves.
Speaker 1:And I say to my friend I was like like we got to get out of here but the the doors lock from the inside. So I jumped up front, took matters into my own hands because he had the keys pushed out the window with maybe a foot jumped out, got her out and we sprung the joint.
Speaker 2:So we go.
Speaker 1:We ran to the next destination and they were like what's going on? Because of course we'd come in. We're like main character energy. You know I didn't enter just like it was any old day, right? So I tell them what happened. The dude shows up. So they ended up having to call the police and it was a whole thing. It ended well. Was he trying to kidnap you? I don't know. I mean, the next day I really had to reflect on that and be like, was I?
Speaker 3:being dramatic. No, I would have done the same thing.
Speaker 2:Oh, my God.
Speaker 3:Did you have like heels on? You don't want to be taken out of the boot Because it was winter.
Speaker 2:So you know what I mean Womp out of wind. Oh my God, yeah.
Speaker 1:That is horrifying, yeah, but also I did, I have to be honest. The next day we sat on the couch for a long time thinking about that. And I was like was that a little like a little, a little mishap, a little mix up in communication?
Speaker 3:I don't know, but it ended well, makes you wonder yeah, wow, that is really something, that's a good story.
Speaker 2:That might be our best one I know, and I didn't mean to cut you off.
Speaker 3:That's okay. Yeah, how can people to wrap up here, how can people stay updated on Jax's journey and help spread awareness?
Speaker 1:Yeah, so if they want to join the registry, you can get a kit sent to your home and all they have to do is text Jax Ramirez, pa to 61474. Find us at any old event. I'll be at Pitt this Saturday.
Speaker 2:What's the number?
Speaker 1:61474. So it's Jax Ramirez, pa to 61474. They can follow us on social media. I'm incredibly active.
Speaker 2:Yes, she is.
Speaker 1:She's good to follow oh thanks, yeah, so it's at Be the match for jacks on instagram and facebook, and then jacks needs a hero on tiktok, where you might see me, like you know, showcasing a few fun items so easy to remember at find the mat or be the match for jacks be the match for jacks, and that's j-a-x j-a-x and then jacks j-a-x hero.
Speaker 2:Nice.
Speaker 3:Missy, you are such a bright light. Thank you for being here. We want to be here for you. You're very special. You're a very special person. We can tell right.
Speaker 2:Of course, not just the main character. You're definitely meant to be in this position and help others, including your son. And we want to give back as much as you do, so thank you for inspiring us.
Speaker 1:Yeah, thank you. Thanks for letting me be here. This was like a bucket list item, so check it. Oh my God.
Speaker 2:I want to get you started, you and maybe your buddy.
Speaker 1:Let's do it. I think we might have a journey in this place.
Speaker 2:I know we might have some production assistants involved Cheers yes, honey, you know some production assistants involved, Cheers yes honey.
Speaker 1:Thanks for watching Mocktails. Or Messy with Missy. From Missy. Yeah, missy Woo, let's go All the M's right. It was a tongue twister.
Speaker 2:Oh, for sure. Yeah, it is For sure. Thank you guys for watching. We're so happy to have Missy in the studio. This is Ryan Frankofsky and Kelly Musgorski. Cheers, cheers, cheers.
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