Emma, Larry Children, Chicago discussed on Dave Sinclair Lincoln and Ford Sports Open Line
It's sports a benign until seven then it's Chili's we can hockey. With Alex and Amy blues back in the ice tomorrow in Calgary against the flames. As I said final show of the year for me thought, I would talk about a couple of things that were important and. Especially something that was super important one of the most important things to me. I think over the course of this year. And that's where my friends Kyle and Sadie come in telling the story of their daughter, Emma, Novon nation that they have started not champion and are doing incredible things with Emma's memory. All right. So holiday season. My friends Cal thinki- Sadie thinki- are in Saint Louis via cargo soon to go back to Chicago. They live in Chicago Sadie is from Saint Louis. Kyle is do you tell people you're from Chicago. Or you're from South Carolina Greenville, the it depends what I'm talking to. Yeah. Can I go in between? I say, I'm half and half usually just probably about right? You ever take a year or two, but you and I met Kyle through one of my buddies from high school Sadie we met at Mizzou Tigers. Go tigers. Clemson Tigers tires. I had a fun afternoon and evening at Clemson once once or twice. And now, you two are married and live in Chicago. And I've talked to folks before and I've talked on the show before about your incredible daughter. Emma, Emma's memory what you guys are doing right now. But since it's the holiday season, and I wanted to spend my last live show of two thousand eighteen and last live show before Christmas talking about some things that are important to me, and the people I care about I asked you guys to swing by. So if you don't mind, let's talk about Emma and talk about how you guys got to where you are right now. And the incredible things that you're doing right now Sadie when you start to tell the story now you've told it so many times now where do you start where where does this story begin for you this oh gosh. How far back? Do you want me to go just go? Emma was born was the fall of two thousand four you're in pi beta PHI, and I was in five emphasizes. Lovely and Christopher aby. No. We had our daughter, Emma. She was born the day after Christmas two thousand sixteen. She was perfect in every single way. Unfortunately, four three and a half four months after she was born. She was diagnosed with two brain tumors. They shortly thereafter, she had two brain surgeries a whole lot of other surgeries, countless rounds of chemotherapy, some stem cell transplants, three stem, cell transplants, and spent most of ten months at Lurie children's hospital of Chicago with the incredible staff at the pediatric brain tumor program at Larry, the doctors, nurses, they all took incredible incredible care of Emma. But in February second of this year, Emma passed away and in the moment that she passed away. We were able to donate her tumors to researchers in the doctors at Larry children's and in that moment, we decide. That we didn't want anybody else to have to undergo what we did. And what did during her short short life? So in coinciding with us being able to donate her tumors to the researchers we also felt it was important to also financially support them as well over the course of the last couple of years. We now understand that pediatric brain tumor research only gets four percent of the government funding for cancer research and our kids deserve more than four. So we founded Emma's memory in hopes that we can help these researchers have more than four percent of funding. But also to find a cure to find a cure to prevent kids from going through. What am I going went through and to prevent families from understanding the the horrible offs that we went through it's incredible. And I can't even imagine some of the decisions and some of the things that happened after tragedy like that. And Kyle people might not realize why it was important and why it was so. Incredible. That you guys were able first of all to donate the tumors because of the things in the type of treatment that Emma was not exposed to that can give researchers information that they would never otherwise get with an adult someone heaven forbid our age or someone older, right? Yeah. I the the ability to donate her tumor, which hadn't been touched by radiation. I think was was pretty unique. So Emma was diagnosed with AT RT and that treatment protocol, usually calls for radiation and so- radiation. I'm not a scientist apparently changes the structure and the the makeup of the tumor, so Emma never wonder when radiation issues too young. So we were able to sort of donate that untouched by radiation to the scientists. And they were able to put it into some of the trials they're working on and the team at Larry is working on at least two different trials that are sort of unique and are being done anywhere else in the country. It's unbelievable. The tumor is part of it which is som. As one of the best part about it. Right. It's incredible. And another thing that I think people don't realize and people don't realize like you said how little funding goes to pediatric brain tumor research. Do you guys? Remember like the moment when we want to do something, and we want to try to raise some money. And it's it's insane. What you've done in ten months, but do you? Remember that moment in in. How you started to kind of mobilize yourselves? It started probably right around her funeral. We had this idea that we wanted to do it. Our cousins opened wasn't go fund me was someone that go fund me actually recently just bought, but they open it up, and they put it online for everyone at the funeral. So I think a lot of people started contributing then so they built up a pretty nice account at that point. And then we actually decided to take off and go to Costa Rica for a week. And I think really most of this stuff was born sitting on the beach in Costa Rica, probably spending way too much time on our phones on the wifi sitting on a in the sand. But that was really where things took off until we contacted Larry to to get things moving at that point. We have an incredible network of hospitals here in Saint Louis and incredible resources for families and for children. But explain if listeners aren't familiar what Larry children's hospital is like and the experience that you guys had and now continued to have with that hospital with the staff with the entire organization. Larry children's hospital of Chicago is one of the most incredible places. I've ever been in my life walking in those doors. The very first day. I was scared to death. Coming in with a sick child coming in not knowing coming in scared for my life and for my daughter's life, but they took us in with open arms with all of the knowledge in the world. This place is designed four kids. It took a theme park. It is like a theme park. I mean, the whole first floor is like you're in an aquarium and each one hanging. I mean, each one of the floors is like a different animal, and I mean, it is so designed four kids that Emma was maybe, unfortunately, too young to enjoy some of the wonderful things that they have for kids to do while they are in the hospital, but through some of the families that we've met in some of the people that we know, you know, having gone through this. It's it's it's a one of kind of place the staff has just been phenomenal since day one the team that we were given you know, I'll give a shout out to Dr play smiley are APN Aaron mcdonagh all of the staff, they were just incredible from the nurses to the housekeepers to the people who would come and check on us in the middle of the night. I mean, it was it was incredible still to this day. We keep in touch with most of them a lot of them, some of the nurses have have become our friends. I know that kind of seems a little taboo, but we lived with these people, and they took care of us for ten months while we were we. We were living there because we didn't leave. We lived there. They've become part of our family, and we're really grateful for all of the support that they gave us during the ten months that we were at the hospital, but also through the support that they've given us since her death, and as we continue to raise money for them raising not just money, but you guys are doing more than that. And when I think about right after this tragedy is born this incredible idea and this action in this mobilization. What was the initial thought what was your initial goal? And then let's talk about what you guys have gone over the course of twenty eighteen and what you're gonna continue to do and how people can help. Yeah. I think the one thing we noticed being in the hospital and spending so much time. There you see names on every single wall on every window seat, nurses, station doctors room, so named after somebody who has spent time there, and you lived there just like we did. So I think some of the people here probably know the. Rizzo. Anthony Rizzo has a big mural on the eighteenth floor in hospitals right in the middle of the city right on the lake front. So it's a twenty two story building. You have great use of the city and one of the things that we wanted to do with the young college before expanding to the other half was to get a a window seat in Emma's name. So we we spent a lot of time up there. We thought it was just kind of a good tribute to her and also away. The thank the staff there for everything that they did for us. So when we contacted Larry we found out it was it was three hundred thousand dollars to to get a window C named. So that was our goal. We originally were thinking that it was going to take five years we signed on for five years to to raise three hundred thousand dollars, and we just sent to work. We did our first event in Greenville in April Greenville, South Carolina of April of last year, and we should say as well. It's Emma's memory, and it's Emma's memory dot org and April two months later. You guys are in Greenville, two months later. Yeah. I don't you say Greeneville or Greenville Greenville. Greenville. So it's like Knoxville this is this is the part where I'm from Chicago. Ville two months later. You guys are in Greenville, and you've gone from a gofundme me or page to this idea to sane. We wanna raise three hundred thousand dollars. We think we can do it in five years and now you've got boots on the ground. What was the first event? So we did we call the beer barbecue and brain tumors. We had it at our our good friends at Berea eighty five in Greenville pretty tiny little brewery, but let me just say Emma love to drink booze hound if you had an ice cube in your glass, she was her finger. So we set up shop in eighty five they gave us kind of the bottling area and had a couple people play some music got some barbecue from buck. Buck barbecue in Greenville and had a bag auction. Thailand auction just kind of hung out for a few hours and ended up raising think twenty six thousand dollars if I remember right, which is incredible. I event I event, and I think the other piece of it was in Saint Louis Chicago's pretty close. And there's a lot of people that have to travel up there. Larry is somewhat within the region. I think going down to Greenville. I mean, it's a it's a whole different part of the country, and they don't really have any ties to it. So to see that we had to explain to them where Larry children's was. And why we were doing this. And you guys had any idea. You guys are probably also learning how to do this. Right. Like, it's not like someone just hands. You a bunch of cash. You're connected to Larry. And you're learning how to fundraise you're learning about five. Oh, one C three. You're learning about Texas donations does Larry provide that support. Everything gets funneled through them. Be a you guys via the foundation. Yeah. There are one hundred percent behind us. They have all of the financial and tax infrastructure to take care of it for us all the money. You're raising goes right through guys. Guys are not making money off. This is not a charitable foundation. Sometimes. Yeah. But it's worth it. Yeah. So I think we were we were just shocked by the support that we got a lot of it was for us. But I think also people just saw what the cause was. And they were they were getting passionate about it. And then you say we want to do something in Saint Louis do something in Chicago. And you guys kind of map out the rest of the summer. And while you're doing that the websites run Emma's memory dot org. You're taking donations as well. How quickly do you see this thing start to take off? And then what was it like to in the middle of your lives in working running this and planning to major events wanna push stadium one in Arlington racetrack in two major cities..