Shari Bailey tells her emotional mother’s tale of Leila’s Gift and pouring love into a special child at Pappas in Cockeysville on “A Cup Of Soup Or Bowl Week” for the Maryland Food Bank.
SUMMARY KEYWORDS
leila, gift, people, week, years, give, good, ripken, wife, hour, super bowl, child, syndrome, charity, sitting, twins, family, mickey mouse, celebration, harford county
SPEAKERS
Shari Bailey, Nestor J. Aparicio
Nestor J. Aparicio 00:01
Welcome back. We are in our final hour. It is our 40 have a couple of Super Bowl our crabcake row we were Pappas wrapping things up. There was a point where I thought the Ravens were going to the Super Bowl. And we would have a couple of Super Bowl here. And the reason I booked Pappas on Friday on this day and the reason I did it the way I did all week was I expected 1000s of people to be here drunk with enthusiasm for the ravens, and I did not get that. But I did get a lovely lady and purple is here to talk about things in the latest gift and we’re gonna we’re gonna get to it. But you asked me you’re like you said something about like you’ve you’ve been here all day. Have you been here all day? I’ve been here all week. I did eight hours Monday at I don’t know how long was fade Lee’s downtown Tuesday I was at Costas and Don dog Wednesday. We’re Coco’s Thursday. We were at State Fair in Catonsville. Not airing fair at the Tony fairgrounds, and all day here. So yes, I did. I’m sort of lying because this morning, I ran an extra hour from nine to 10 of what happened Wednesday, because it just I did. I didn’t have a guest at nine o’clock here. They’re not open. So, but I’ve made it. It’s the final hour and I want you to know, I’ve saved the best for last. All right. Sherry wrote to me earlier week, she’s like, do I need to know anything? And I’m like, where purple? I didn’t see that. We look like kinda like a bolton. We’re Bobbsey Twins or something like that. And I said to you, you know all the answers to Lila’s gift. This is an important message. Just try to have some fun. And you said fund your middle name. So I said, Sherry fun. Bailey is
Shari Bailey 01:43
calling you that all day. How are you? I’m wonderful. How are you
Nestor J. Aparicio 01:46
sleeveless gift other than coming wrapped in this beautiful purple package. Thank
Shari Bailey 01:50
you go Ravens. So Leila is gift is actually a nonprofit that I started after one of my twin daughters named Leila. So back in 2014, I gave birth to my beautiful angels, Alana and Leila, and I gave birth to them at Johns Hopkins Hospital and downtown Baldwin in 2014.
Nestor J. Aparicio 02:08
In September, Okay,
Shari Bailey 02:11
keep going. Yeah. So, very long story short, going into the labor. I knew that Leila had a heart defect that was detected on the ultrasound, but that was literally all I knew. gave birth to.
Nestor J. Aparicio 02:23
It’s worrisome enough, right is the worst seminar? Sure, of course. Absolutely.
Shari Bailey 02:27
So I was precaution that, hey, listen, it may be a situation where as soon as you give birth to her, she may need heart surgery, that same week will keep you posted. So that was my I would say, you know, precautionary statement going into my labor, right? Wife,
Nestor J. Aparicio 02:45
she might have leukemia, and then the next day, you don’t want to Yeah, yeah, yeah. So the doctors come in and they sort of, you know, I’ll tell you what doctors are honest, more honest than most people are with me in the real world. Is this true? I mean, it’s hard but they’re the honest they’re honest, though. And that’s you need that you do I mean, you got to trust your dog image to be real. All right. You got it real keep keep going. So we
Shari Bailey 03:07
got it real. So I gave birth Alana came out first she was Baby A and then Baby B comes out. Leila never got to see her because she immediately had respiratory issues. They whisked they rushed her away and they hooked up to oxygen tanks. And again, outside the room I was in I was in or room because I was giving birth to twins. So anywho weeks went by. They said something’s going on with Leila. We don’t know what it is. She’s not swallowing. She’s not opening her eyes. She has very serious respiratory issues. Her heart defect is still very active, and something that we need to address but we can’t do it yet until we stabilize her breathing. So there was a lot of things happening. In the first four months of her life. She had roughly seven surgeries from eye surgery to kidney surgery to stomach surgery, heart surgery, I mean, poor baby went through it. But very long story short, they were relentless. The hospital is relentless and figuring it out. For months later, they told me that she had something called Jacobsen syndrome. And that was based on extensive genetic landscape testing that was done. And she was there first case study at Hopkins. So you can imagine how rare the syndrome is. Back in 2014. She was one in about 100 cases in the world. Well, I’ll stop there. That was so rare. So I’m like, Okay, what’s next? Will she walk? Will she talk? Will she be okay? Will she live? And they told me we don’t know much. But what we do know based on the small stats available is that most children don’t make it past the age of two, especially girls with the syndrome.
Nestor J. Aparicio 04:45
Now you’re eight weeks into having a healthy child.
Shari Bailey 04:49
So this is four months later, so this is much less 12 weeks. 12
Nestor J. Aparicio 04:52
weeks later, you have your mother of a healthy child of twin, a
Shari Bailey 04:57
Lana very healthy
Nestor J. Aparicio 05:00
Really, man, that’s, that’s incredible. Keep going, Yeah, I gotta hear because I know you’re strong woman, let’s keep going, you’re gonna be stronger. They were the ones are gonna make me cry.
Shari Bailey 05:10
They already made me cry. But you know, and it took the doctor sitting me down and saying it’s time to discharge her now that we know her syndrome, you’re gonna walk away with oxygen machines, oxygen tanks, she has a feeding machine. And I sat there as a new mom of twins, let alone a new, a new mom of a child with special needs. And I’m like, What do I do?
Nestor J. Aparicio 05:37
Who do I call? Who
Shari Bailey 05:38
do I call what training I don’t have training for this. I’m not a medical profession, like, professional. Other first time mom at this time I had kids I had stuff kids, but like this, these are my first biological children. And I’m like, Whoa, this is real. So needless to say, every birthday became super important. So her first birthday, their first birthday, their second birthday, third. And now fast forward by the grace of God. Lon and Leila are nine years old, beautiful. It’s an amazing story. Still challenges she’s nonverbal. She’s mostly in a wheelchair. She’s still on a feeding tube. She’s still in diapers. So there’s a bunch of things she just learned last year, she’s now
Nestor J. Aparicio 06:21
with a life expectancy of two years, right? Much.
Shari Bailey 06:23
Okay, pretty much. But she beat that, which is a story in itself. But back in 2022, my husband and I really understood more than ever the challenges that we were dealing with as a family, but also realizing that we’re not the only ones. It’s not until you are in this journey, that you realize how many people are actually affected by it. And it’s something I’ve never thought of probably thought it’s
Nestor J. Aparicio 06:52
rare, but how rare but more more prevalent because you’re dealing with it. Someone else had the same hand. You were done. Maybe not twins, but certainly, and not
Shari Bailey 07:01
Jacobsen, but still, it’s someone that has a rare syndrome, or has a special need or is dealing with a disability and the family has to learn how to be a caregiver, I always say that you can be a parent. But there’s a difference between a parent and a caregiver. And that’s a duty we cannot ignore. As someone out of character. Absolutely. I have to learn how to use the feeding machine, how to give them medications, how to make sure that you know the therapies are happening at home and all of these things. And these are things you don’t train for when you don’t expect it. So where
Nestor J. Aparicio 07:34
did you did you have any resource to call other than your own? Good sense and a good husband or
Shari Bailey 07:40
weren’t enough? Okay, fair enough. This is why Lila’s GIF was created to
Nestor J. Aparicio 07:44
ultimately lose gifts. And let’s talk about yes lately as a gift.
Shari Bailey 07:47
She really is. And I love that you said that because it has a dual meaning it’s about individuals just like Leila, really have a gift. You know, I always say Leila took her first steps at six years old. And that was something that we did not expect to see. But even today at nine she has trouble. She obviously can’t walk down the steps, right? So she learned on her own how to put her butt on each step and scoot down. And that’s something that she did on her own huge progress. Absolutely. And these are things that we call milestones in our organization. So our latest gift to nonprofit advocates for supports and celebrates children with special needs and disabilities, as well as supporting the families, the caregivers. So we throw free birthday and big milestone parties and celebrations for children with special needs and disabilities.
Nestor J. Aparicio 08:37
And how do you do that? What does that mean throwing a party? Yes, it’s fun. You know, some parties and you’re fun. Now, you know, I want to know what you do.
Shari Bailey 08:46
It’s a great combination. You know, it’s a way to turn something that is a challenge into a celebration. And we’ve done that quite well. We turned someone said you turn tragedy into triumph and I love that statement. Because what we do is we give the gift and a gift is not a small gift. I mean we’ve given out bikes Car Toys, Games, like Roblox gift certificates, like of like big amounts. So we we do it up for the children and it really depends on what they like and what they can tolerate and what they can appreciate. Just Leila like Mickey Mouse. All right.
Nestor J. Aparicio 09:21
Woman Mickey Mouse, Stevie Wonder belt buckle because it’s orange. She’s
Shari Bailey 09:25
obsessed with Mickey Mouse. Like, I’ve never seen this kind of obsession before. From the moment she wakes up to the moment she goes to sleep Mickey Mouse, just she’ll put him under her pillow and that’s how she goes to sleep.
Nestor J. Aparicio 09:38
Mickey Mouse All right. Some people like Donald Duck, you know, she loves the voice of Mickey has she been to the Magic Kingdom?
Shari Bailey 09:45
No, not yet. Because of just wouldn’t be able to enjoy it. She would not be able to enjoy this as most kids would. Yeah, but we give her all the Mickey that she can handle
Nestor J. Aparicio 09:57
at home as she met Mickey the real man Not yet. That’s a big on
Shari Bailey 10:01
the list like to do. And I don’t know how she would handle it because real life Mickey I don’t know. She, she might go wild. I don’t know. She might actually say her first where I met the
Nestor J. Aparicio 10:13
real Santa Claus wants me out when I was a kid too. So, les was gift is what we’re promoting. You know, I’m going to try to do this without busting up because you’re stronger may clearly. My wife was diagnosed with cancer in March of 2014. She fought at Hopkins. And the nice emir, the night that she was diagnosed, she went on the 13th. And they said you might on the 14th, they said you do we freaked out. And we locked ourselves in her. We call it the hotel room down there a Kimmel cancer. And the only person we knew that had had leukemia was Chuck pagano was the Colts coach. He was a former ravens defense coordinator. And he’s in my phone. So text chuck, chuck pulled over with his wife, he told me story later, he pulled over and talk to us for an hour and a half in the car when they were headed the phenomena and put his wife on speakerphone, who we know as well. And he’s trying to talk to us and we’re just a mess, right? We’re a mess. And he said, I heard him on the phone. He’s like, in the end, this will be a gift to you. You’ll love it.
Shari Bailey 11:19
I love it. And do you feel that way? I’m
Nestor J. Aparicio 11:22
here. I mean, like I’m here doing this because of that. Yes. Otherwise, I probably still have my press pass back. And I wouldn’t ever but I I’ve done 27 Super Bowls. So we used to do this at the Super Bowl every year for 27 years. So you asked if I’d been here all day. When I go to the Super Bowls. We would get there six in the morning, sometimes live west coast 3am When the Super Bowl is in Arizona or whatever, right? And we’d be there all day and it right around now five, six o’clock on Friday, we break down and go drink have a good time. But you know, Dan Marino would sit here and there’s Terry Bradshaw, and there’s Joe Monty, they would all sit down and have a charity that they were promoting. They would be like, I’m here for this company on behalf of Leyland’s gift, right. So they would always have like a charity. So all these years later, the gift to me was like getting thrown out two years ago, figuring out what I was going to do. And then this year deciding I was going to do this for the food bank. But I miss my goal. I don’t know if you have goals that lately. I really wanted to have 100 charities this week, but you’re only number 69 They’re gonna be number seven. Phenomenal. Yeah. So like, I didn’t get to 100. But this is a couple of Super Bowl. I we’re using Roman numerals, like the NFL. Yeah. So this is one. So next year, you know, we’ll step it up, do a little bit more. But it has been a gift. It’s been a gift, because I’ve met with 70 people this week doing this because I wouldn’t be doing this work.
Shari Bailey 12:44
So I don’t want to derail the conversation. But honestly, what you’re doing is giving some really necessary companies and missions the platform to spread the word. Yeah. And like you said, it’s not just, you know,
Nestor J. Aparicio 12:57
I’m gonna tell people, these people are going to tell people.
Shari Bailey 13:01
Well, it’s not just about me, it’s about these beautiful people that I met, and everyone else here that has a cause and a purpose. But at the end of the day, you said it best when you gave your friend that call, and he pulled over for an hour and a half. But you didn’t know that he knew so much up until that moment. And that’s where I’ve been enlightened through this journey. Because it wasn’t until I had Laila that I realized how many people are affected by the challenges of having a special needs child or a child with disabilities. And this is now my purpose. So this is your purpose. That’s what you did. I bet you didn’t think you came into life.
Nestor J. Aparicio 13:36
Now that’s even better. So we’re the final hour. So you know, I saved the best for last right? I mean, I kind of did, without realizing it. I appreciate it was my gift. Sherry fun. Bailey’s here, landless gift. And how’s your other daughter? Let’s talk about a little bit. It’s
Shari Bailey 13:52
phenomenal. She is the best advocate for Leila. There’s a video I got a
Nestor J. Aparicio 13:57
caregiver.
Shari Bailey 13:58
Oh my god. First of all, they look nothing alike. Okay, so it’s funny because we’ve even had people on the bully intranet say, they’re not really twins. This story is made up.
Nestor J. Aparicio 14:09
No human being would say that, but that’s because they look completely
Shari Bailey 14:12
not alike. However, she loves her sister like nothing else. I have her on tape, where I asked her what is the biggest challenge of having a sibling with special needs, and I do not coach my daughter. She literally said to me, there was an experience that she had where she told her friends that she has a special needs sister. And they said I’m sorry. She said there’s really nothing to be sorry about. So I love that spirit and her know and I know nine years old, this was actually at eight years old when we taped this. So I love the spirit. I love that we’re able to bring that message not only to the outside, but in our own household where she embraces the fact that her sister has diverse abilities. And that’s okay, this is a sheet I’ve
Nestor J. Aparicio 14:57
ever met who has grown up with a sibling with special needs. eats. There are different kinds of person. There’s just the wire different in regard to selfishness in regard to service just wired differently. And it’s not anything anybody wish, but it’s a gift.
Shari Bailey 15:12
It is Yes. And laylaz gift provides sibling support and things like what do you do?
Nestor J. Aparicio 15:16
Tell me what you do. What is laylaz gift other than just a beautiful story of perseverance for you and your husband and your family? Yeah,
Shari Bailey 15:22
we throw the core part of our program is we throw the free birthdays and milestone parties. So we have families that say, My child took their first steps, my child said their first word, celebrate that, let’s celebrate that, right? They’re not in diapers anymore. They’re potty trained. That’s a big moment. And where people think, oh, that’s just human nature. No, it’s really not because it took them 13 years to do it as an example. Right? So we we’ve celebrate those moments, but also also birthdays, because every 365 days for our families are very much different. It has a bunch of ups and downs, scary moments, happy moments, right and never ends. You think you’re stable. But then, for instance, last year, we found out that now Leila is epileptic and she now has surgeries and, or I’m sorry, seizures. And you know, she hasn’t gotten to the point of brain surgery, anything but there is abnormal tea in her brain now as she gets older with this rare syndrome that she was supposed to not beat. Alright, so there are still challenges that we deal with. So long story short, the celebrations are a big part. So we give them free gifts, and we’re talking great guests. party decorations, cake, personalized cake.
Nestor J. Aparicio 16:31
For me, we have a ball party, I
Shari Bailey 16:33
have a ball, we have a ball, then we do support. So we do sibling support. We have activities that are inclusive, because we believe that it’s about bringing everyone together. And the more we are all together and we recognize each other’s diverse abilities, the less it feels like an isolated community. Right. So we have community events. We have smaller intimate gatherings where we do inclusive type activities. Lana goes to every single activity and I don’t force her this is my other daughter. She is a big advocate for her sister and individuals that have special needs and disabilities. So that’s a big part of what we do. And then advocate. I’m constantly looking for opportunities to talk about how important it is to look through a lens of being inclusive. And
Nestor J. Aparicio 17:18
every day somebody is going to go through something you went through, there’s going to be someone else right? Always. Yeah, well, I’m glad you’re there. Tell people what they can do to help you. How can we help you
Shari Bailey 17:27
we are always looking for celebrators, as we call them those celebrators are people that can be volunteers or people that have influenced that would love to help us spread the word and be part of our program show up to our community events. Maybe there are people out there that are in a similar position that would love to bring expand the reach and their neighborhoods and communities. So we’re always looking for celebrators. Obviously, we’re a nonprofit, so
Nestor J. Aparicio 17:51
donations matter live and stuff. You know, we
Shari Bailey 17:54
actually just opened our first celebration center. It’s a celebration Advocacy Center in Harford County, Maryland is the first of its kind in the nation. I repeat in the nation, we had a huge ribbon cutting about three weeks ago. We’re still getting heartbroken, Harford County, Aberdeen,
Nestor J. Aparicio 18:10
Aberdeen, all right, yes.
Shari Bailey 18:11
All right. Yes. So this is officially where we’re now holding all of our complimentary celebrations. Family down to Cal Ripken. There you go. It’s that’s actually we’re having our gala at the Ripken stadium this year on October 12. So we’d love to see everyone there as well to help us continue. Why don’t John maroon here? Oh, you know, John maroon I know. Very well. QPR is fantastic. The
Nestor J. Aparicio 18:32
Ripken people are the best to and now they are sitting under the rutschman and the Oriole thing here we’re, we’re about to enter a new era of Oreo. I say the new and improved Baltimore Orioles. Latest gifts can be found at Leyland’s gift.org That’s l a i l a s gift.org. Good Harford County folk here doing good stuff and wearing their purple wearing
Shari Bailey 18:52
their purple. Well, I’m still in the purple spirit. And if you’re in the spirit of giving, here’s
Nestor J. Aparicio 18:58
the deal next a year from now when I do a cup of Super Bowl I capital I capital I to I’ll make you I’m going to make you the honorary last hour because I’m going to need somebody like you propping me up. You don’t I mean? Because my wife on Monday took one look at me when I got home. I’ve been going out every night doing all the post work to get the radio together. And I’ve been asleep by nine o’clock every night this week. And my wife’s like you’re gonna lose your voice by Friday, like Friday. You’re doing good though. Hi, Sharon. Peter Angelos but I have hydrated the oil my back blew out on Tuesday but I’m I’m alright, I’m getting there. And then I meet people like you and I’m like I pitched it about anything because like all you’ve been through girl Come
Shari Bailey 19:41
on. But let’s talk let’s talk about your white. How’s she doing?
Nestor J. Aparicio 19:44
She’s beautiful. She’s too time lucky Mr. Black. Matter of fact, my wife had my back today at least will this thing fell away. This is. This is from the NFL game in Germany. The man who saved her life is German. He’s our friend. It was his birthday. and they were playing the culture playing the Patriots. And my wife took her sister who’s a breast cancer survivor and has MS to Paris, Amsterdam and, and Germany for the football game. So the man who saved her life comes here once a year we go there. You know, Facebook, he was a Steelers fan until we fixed it. We were told that that’s not acceptable, especially with a transplant. I mean, my wife’s not going to have a twin DNA. Who’s a Steeler fan. Yeah, it’s just not. So we fix that. And other than that, she’s great. You know, she’s 1010 years, there’ll be 10 years next month. She had two transplants, one in 14, one and 15. So I ask you about September 14, my wife had her first transplant in June of 14, struggled most of that summer and then did well, and then relapsed in September 15. And didn’t do well. But survived and through the holidays, and she’s been good since January 16. You know, like my brain, you know, clean completely and nothing backwards. Everything’s forward. So we’re real happy about progress. Yeah. And we do a ton with therapists my year. Oh, no, it really was the gift that made us do all of this stuff. So otherwise, I’d be self indulgent Vegas right now. Drinking Roger Goodell is free beer. Funny how that works, right? Yeah, like, I wouldn’t be worried. I would be 123 In the afternoon, Las Vegas. And I would be looking for really big stars because I would have done so much the first four days that by Friday afternoon. No offense to someone with an incredible story like yours. But like if it wasn’t Joe Montana, by Friday afternoon, I would have done so much stuff that I don’t even work much on Friday. So this is much more important work that I’m doing here. They don’t need my money in Vegas. And it
Shari Bailey 21:45
wasn’t until that moment that your wife got that diagnosis that this became a reality for you. Absolutely.
Nestor J. Aparicio 21:50
Well what really happened and I want to give Bill call some love on this while we get last hour. I’m gonna have my last couple guests on here till we get to five o’clock Bill call after my wife survived the second time we did a big event with Mike Tomlin, Brian Billick, and John Harbaugh. Three simple winning coaches. It was for them because my hero, also Harford County based charity. We feature them Monday, Michelle, President Walsh and Eric Sauer. And so we did that that event. And Bill Cole said to me, Hey, all this charity stuff you’re doing, man, I want to sponsor you talking not about sports. You should be talking to people like Sherry from laylaz gift. And people from Andrews laughing gas and talking about given food. You should be doing good stuff. So he came out yesterday and did three hours. And then Mike did three hours today. But But Bill was the first sponsor of my community and charity series. And I use Thursday morning as my church because I’m not the most religious stuff spiritual, but I don’t go to church on Sunday, I decided Thursday mornings I was going to have for people like you on at 7am 738 and 830. And I booked that for three, four years to the plague happened and then I just went to zoom and I’m like, I’m not doing this every Thursday. I’m just gonna do it whenever people need me. You know what I mean? Yeah. Anybody asked you come on the air. That’s kind of a simple thing. So you have a sponsor in this thing. Who is Josh from electric? Do you want to give Josh lemons? Absolutely.
Shari Bailey 23:12
Josh actually sponsored our gala last year
Nestor J. Aparicio 23:16
to your Bar Mitzvah. Not bad.
Shari Bailey 23:20
But he did the entertainment. So shout out to Josh from Elektra. And you know, the lampshade on
Nestor J. Aparicio 23:25
the head or No,
Shari Bailey 23:26
no, he didn’t. Maybe I’ll make him do a good party now. I’ll make him do it this year. Dude, shout out to Josh he let me know all about this wonderful situation that you have going on. And I have a new names for you. One that name maybe statement. Got touchdowns to touch in the hearts.
Nestor J. Aparicio 23:51
I had that’ll take bits. Okay. Sherry fun Bailey’s here. Leila is gift. She has a special gift and a child and two children and it’s doing good things. And if you know someone with some special needs, or in this circumstance for sure, find them and if you want to give leadless gift.org Find them up in Aberdeen coming to a Ripken stadium near you. Excuse me, Oreos owner Cal Ripken I gotta get that. Get that rolling off the tongue a little bit. We’re papists a cup of Super Bowl is crabcake row it is our number 40 the witching hour. It’s our final hour Andrews laughing class, they’re going to come up. I’m gonna let them talk. I’m gonna get some Kleenex because I’m gonna need its last segment. We’re gonna be given some food away. And we’re going to be talking about some more pantries around here. I want to thank Carmen Dogwatch Oh, and the folks from Maryland food bank for being incredibly supportive. He was an amazing guest yesterday. Everything we’re doing for all of you. I should tell you all the video and all this gonna be up at Baltimore positive later on in the month because I ended down day and then I’m going up to Hollywood casino putting a lampshade on my head and Taylor and I are gonna watch our game together and I’m probably gonna play blackjack and then Monday morning I’m going to wake up a change man because the Orioles are going to be you know, fit Next and I’m gonna figure it out but I’m gonna have all these pieces up Baltimore positive every can share it. And if you missed anything this week, you didn’t miss it. It’s coming to the website in the next couple of weeks when I get off my lazy tush I’ve been sitting on my tush too long. I need to stand up. Move around. I need a hot yoga class. Oh, Pat. So tomorrow I’m gonna get right with the yoga gods. All right, Andrews laughing gas. I really I think I did save the best for last. I’m really looking forward to this segment. Because I need a good cry on a Friday afternoon. Stay with us Baltimore. We’re doing it crabcake row. We’re Pappas
