A Mother’s Crusade: Shari Bailey’s Unyielding Advocacy for Inclusion

Rich 0:00
I had somebody from the Chamber of Commerce reach out to me, Natalie, and she said, Rich, you have to get this young lady on your podcast. No, Natalie tells me, I got to do some. Of course I'm going to do it. So I have Sherry and Lani here from Lila's gift. 

Shari 0:17
Hello. 

Rich 0:18
And go say hi. Hi. So Lon is going to take over. She's going to run everything. Do you know what questions I ask? 

Lana 0:26
No. No. 

Rich 0:27
All right. I'll let you slide this time. So we find out about Lila's gift, actually. Now, Lady Lane. You know, Lila isn't a sister, right? 

Shari 0:40
Twin sister? 

Rich 0:41
What? Yeah. Twin sisters. No way. She's your twin sister. And you're both 13. No, you're not nine. No. What? I thought you were in high school already. As smart as you are. 

No, you're in ninth grade. No. 

Lana 1:03
No, you're third grade. 

Rich 1:04
Yeah. What? Come on. I think you're pulling my leg here. I think you're messing with me. 

You sure? Is it a twin thing? I bet you and your sister, you and Lila together, you pick on, pick on other people. You would. You both would be picking on me, wouldn't you? No. You would take over the podcast, though, wouldn't you? 

For those of you that can't see, she's not. She's not. So, Sherry, explain to us what is Layla's gift? 

Shari 1:37
Layla's gift? Layla's gift. 

Rich 1:38
Now. See it? She missed you. Yeah. 

Shari 1:41
Call me Layla. See what happened. He changed it from Layla's gift to Layla's gift. There you go. 

Rich 1:46
Show me up already. It's all right. I'll let you slide. So what? I want you to write Layla's gift. Yes. 

Shari 1:57
Thank you again. First. First and foremost, thanks for the opportunity. We really appreciate it. Yeah. So Layla's gift is actually inspired by Layla. So Lana and Layla, my girls were born in 2014, and at the time where I gave Labour, it was at Johns Hopkins Hospital. Mm hmm. When Layla was born, they immediately saw that she had some serious respiratory issues and some other issues. And about four months into her non-icu stay at the hospital, they figured out that she has something called Jacobsen syndrome, which in 2014, there were only about 100 cases in the world of the syndrome. What? It was nuts. They actually told me that Layla was their first case study. 

Rich 2:40
All right, Now, this scares me because you said in 2014, you said there was only 100 cases. Correct. Which means there's a lot more now. 

Shari 2:48
Not that many. 

Rich 2:49
Okay. 

Shari 2:50
Still not that many. Yeah, I think the last visit we had at Hopkins, they said they may have had one or two more individuals come diagnosed with Jacobsen. 

Rich 3:01
Hopkins is so amazing. I keep telling you how many people from here I've talked to that something was wrong for them. And it wasn't if it wasn't for Hopkins. They still want. 

Shari 3:13
To know why it would be undiagnosed. Yeah, for sure. They were relentless in trying to figure out what was Layla's condition. It was something they've never seen before. They saw similarities in other syndromes. But then she also showed other types of defects that were very different. So, yeah, four months. And they figured out it was Jacobsen syndrome. And based on the literature that they found what they could pull together to tell me, considering it wasn't a lot of information, was that 25% of children with the syndrome don't make it past two years old. 

Rich 3:44
Why? Yep. What exactly is Jacobsen since syndrome? 

Shari 3:48
It's a deletion of chromosome 11. So from from what we've been able to gather, it creates developmental and physical limitations and delays. Okay. And with Layla specifically, her first four months, she had heart surgery. Kidney surgery. She was on oxygen. She her eyes weren't moving in the right way. So she had to have eye surgery. There was a bunch of stuff that she dealt with just under a year. 

Rich 4:12
Four months. 

Shari 4:13
Her first four. 

Rich 4:13
Months. Oh, poor baby. Yes. 

Shari 4:15
I know. She made it through. She she's a trooper. 

Rich 4:19
Wow. And she's nine now. 

Shari 4:21
Yes. Fast forward. They just turned nine last week, which was. 

Rich 4:25
Such a blessing. Thank you. You want me to sing Happy birthday to you? No, You don't want to think. You want me to sing Happy birthday to you? You'll go running out that door like Mommy. That guy cannot not sing. 

So she's. She's doing better now. 

Shari 4:43
So she's still non-verbal. She partnership? Yeah. Yeah. Layla does not speak. She makes sounds, but she does not speak. She does not eat by mouth. She's on a feeding tube, and she just. She took her first steps when she was six years old. And that was a huge milestone for us because we didn't know if she would walk. But she still doesn't walk long. She can take steps, but her her legs aren't really built for for sustainable walking. So she's mostly in a wheelchair. 

Rich 5:12
So I guess with this being so rare, there's still a lot of research they're doing. 

Shari 5:18
Not much out there, unfortunately. There was some extensive research done when I first had Leila back around 2015. There was a gentleman in California that was doing some some research efforts, but that hasn't stopped. I think there are research efforts in pockets, but nothing extremely aggressive because again, it's very rare. So the need. 

Rich 5:41
I guess, for aggressive research to have a. 

Shari 5:43
Diagnosis. I think so too. I think and again, if it wasn't for Hopkins relentless efforts to diagnose it, I would probably be living with an undiagnosed situation. 

Rich 5:55
All right. I have to ask you this, and I hope you don't mind me is not at all. Okay. So when you gave birth and they came to you and they found out, what was your reaction? How how were you I mean, how was your mental health and everything? 

Shari 6:08
That's a fantastic question, Rich. I remember my husband at the time. I have a new marriage now, but my husband at the time, the girl's father, him and I were in the room and the doctors came in. It was about five doctors came in and they said, here's what we know. And they laid it all out. They said things like, She may never brush your teeth, she may never learn to walk. We don't know what you should be expecting, but what we will give you are breathing machines to take home the feeding machine. They gave us a small tutorial and it was literally an hour or so of just mind blowing information. And I you bring up mental health. I think at that moment I was assigned the duty of caregiving without having any training, without knowing what to expect. And then obviously as a new mom as well, uh, with Lana still at home and healthy and not needing the same care as Leila, it was very difficult to think of what would my life look like? I'm still working. I'm still doing all of these things. How will we manage with Layla's care? 

Rich 7:20
How I should. How long were you in the hospital for after you gave birth. 

Shari 7:27
So I was discharged after two days. 

Rich 7:30
What? Yes, but you couldn't take her home. 

Shari 7:33
I couldn't take her home. I took Lana home. So there was a period of time I kid you not rich, where I would go to work. And at the time we lived in Cecil County. So I would go to work, I would go home, I would make sure that Lorna's tucked in, and then I would go to the hospital to have and to Hopkins and Baltimore City, and I would stay the night with Layla, and then I would go to work in the morning. And that was really my routine for about three months. 

Rich 7:59
Where did you work at? 

Shari 8:01
I worked at a company in Harford County that was really, really empathetic and understanding of the situation. 

Rich 8:08
So you're going from Cecil County to Baltimore City? Yeah. And then the Hartford to see who can help. 

Shari 8:16
Exactly. For about three months. I did that for. 

Rich 8:19
About three months. Yeah. Okay. So when were you finally able to bring her home? 

Shari 8:25
Month. For once they diagnosed her. Once they felt like they could provide the appropriate level of care and equipment. We took her home. And I'll never forget the first two weeks. It was like 

learning by fire. Right. It was. You know, the respiratory machine would go off in the middle of the night and you'd be like, Oh my God, is she okay? Is everything all right? And they showed us how to get her breathing back if it if it was alarming. And there was a lot I think those first few weeks and again, being a new mom, still having Lorna and trying to give that balance and my parenting was was extremely tough. 

Rich 9:03
Wow. And now she's nine. 

Shari 9:06
Yes. 

Rich 9:06
So now how much how many changes did you have to do to your house? Because now I mean, ADA compliant and all that. 

Shari 9:18
Yeah. Believe it or not, very minimal. And and and for that, she's in a wheelchair. Right. But what we typically do is keep the wheelchair in the garage. So that way if we take her out, it's very easy to access. 

Rich 9:34
So you're in a single family. 

Shari 9:35
Single family home. Yeah. Yeah. So that's very helpful or something. Oh, there was a time when I was relocated for work and. And we were in an apartment. Do you remember those days? Lorna and I would literally have to carry Layla and Lorna at the time to some degree, because they were still young down the steps. Yeah. Yeah. To go to the car. 

Rich 9:56
How old were they then? 

Shari 9:57
Uh, three. 

Rich 9:59
So that. That. That. That they were pretty big. 

Shari 10:02
Yeah, they were pretty big. They were pretty big. But Layla was not walking at the time, so. 

Rich 10:07
Yeah. Lorna, how come you didn't carry Layla? 

You kind of carried your mom and Layla, right? No. No, 

no. Okay. Just a little. No. Okay. 

Lana 10:22
Never gonna carry Layla right now, though. 

Rich 10:24
You do. 

Shari 10:24
She's such a great. 

Rich 10:26
So you're a big help. So I. Let me ask you. So what is it that you do to actually help mom out? 

Lana 10:33
Um, like, sometimes I help her, like, put the feeding tube and stuff on Layla. 

Rich 10:40
And really. 

Shari 10:42
She came to me about two months ago, and she said, Mommy, I think I'm ready to learn how to feed Layla. And I know it's so beautiful. 

Rich 10:52
Oh, God. 

Shari 10:53
And I taught her, and she'll sometimes, like, if I'm busy doing something at home, she'll hook her up. I'm sorry. 

Rich 11:00
No, you're fine. It's just amazing. So what else do you do? Do you cook dinner for Mom and Layla? Well, no, because Lily's on feeding. She is. So. All right. So how's that? Yeah. Is it just liquids? 

Shari 11:14
It's like it's PDA. Sure. Yeah. Oh, okay. Yeah. So it's the pediasure milk? Yeah. Okay. So it's. It's boosted with all the vitamins and everything that she needs, and we give her just the right amount for her to have the right caloric count daily. But, yeah, we try to entertain her with food. Sometimes she'll lick Rito. 

Rich 11:36
Here and there, but. 

Shari 11:38
But she doesn't consume anything. Unfortunately. She'll drink water, which is good. It's it's nice to see, but she's very picky about her liquids. So if it's not water, she doesn't want to try any juice or anything like that. 

Rich 11:50
Uh, but I. So she she's on a feeding tube. She's in a wheelchair? Mm hmm. She can't speak. 

Shari 11:57
Correct. And then her condition also comes with a platelet dysfunction. We haven't had to be worried about that quite yet, but it's still there, which means she doesn't clot well, like normal people. So if she cuts herself, it could be a very serious situation. 

Rich 12:14
Wow. Yeah. 

Shari 12:15
And then last year, Christmas, she had her first set of seizures. So she's now considered epileptic as well. She's Yeah. And that's, you know, and I think that's something that I wasn't also prepared for is, okay, great. She made it past the stats, but what does that mean for her development? Right. Right. Because now as she grows, as her brain matures, as her body matures, how will that continue to misfire? Right. Or will it even itself out? And I think last year with the seizures, it was a really like bright moment for me. It was enlightening to think, wow, the challenge is not over. There could be other things that come up as she matures and develops. 

Yeah, yeah. 

Rich 13:03
Or she could get better. 

Shari 13:05
Or she can get better. So I always like to look at the positive. 

Rich 13:07
Yeah. We're going to see she gets better, right? 

Lana 13:10
Yeah. 

Rich 13:11
Yeah. Because this way she can feed you 

all. Remember all those Doritos she licked? She saved them. So you can eat them. No, You wouldn't do that. No, But you're twins. 

Lana 13:28
No, it's all mushy one to you. 

Rich 13:31
Well, yeah. And what's your point? Do you eat bread? 

Lana 13:37
Not that much. Oh. 

Rich 13:39
Okay. Do you drink milk or whatever? No. Do you drink anything? 

Lana 13:43
Milk is spicy. 

Rich 13:44
What? I don't know. She says milk is spicy all the time. I don't know what she's tasting. What are you doing? Putting all in your milk. No hot peppers? No. What's making the milk spicy? 

Lana 13:57
Oh. 

Rich 13:59
Mom, I think that's the kind of milk 

I have the expiration date. At some. 

Shari 14:05
Point, I'm like, Wait, it's. 

Rich 14:06
Fine. Where are these cows coming from? That this milk is coming from spicy cows. Cows are eating hot peppers, helping hers and all that stuff, aren't they? 

Lana 14:17
Maybe. 

Rich 14:18
Maybe that way. So you do you like it? Do you like helping opinions with that? 

Lana 14:25
Yeah. 

Rich 14:26
All right, hold up. Now, wait a minute, Lala. 

How is it you think milk is spicy, but you'll turn around. You have a pain, you pepper. 

Lana 14:35
Now, if you like. 

Shari 14:37
She likes the hot peppers. 

Rich 14:41
That's spicy. 

Lana 14:43
No, but. 

Rich 14:45
If it gets too hot, you chase it down with milk. There you go. 

Lana 14:48
But that's like liquid spicy milk for liquid. 

Rich 14:52
Spicy milk is liquid spicy. Okay, Hot peppers. But what if you grind up the peppers in them because you don't do hot sauce, do you? Yeah. Yeah. All right, Wait a minute. I am getting hot. Sauce is liquid, and that's liquid spicy. 

Lana 15:08
Saroja not hot sauce. 

Rich 15:10
All right. Do you. Do you eat cereal? Yes. What do you put on your cereal? 

Lana 15:17
Milk. But. No, no, no, no. It's because of cereals in it. 

Rich 15:22
That the cereal was already in the milk? 

Lana 15:25
No, the cereal? No. Like when you pour the milk and you put the cereal in it. Now like the cereal combined with it. 

Rich 15:33
So, So when the cereal combines with it doesn't make the milk spicy. Yes. Okay. Do you like ice cream? Yeah, because that's milk too. 

Lana 15:44
But. And flavor. 

Rich 15:46
It. Oh, not spicy flavor. Yeah. Okay. Well, when. What else. What else don't I know about milk? 

Do you like butter? No, not too spicy. 

Lana 16:03
No, 

just taste. 

Rich 16:08
Taste weird. It's probably the spice in it. Yeah. What about almond milk? Do you like almond milk? No, no. You don't like almond milk. You're quick to say no to that one. Okay. Soy milk? No, no, no. Goat milk. No, no, No milk at all. 

Lana 16:25
Yeah. 

Rich 16:26
Just the milk you put on your milk. I mean, just the milk you pour on your cereal. 

Lana 16:30
Yes. 

Rich 16:31
Okay. Which is regular milk, but it's too spicy to drink by itself. 

Lana 16:35
Yes. 

Rich 16:36
Okay. I never learned so much about milk. 

Shari 16:40
Me to read. Me too. It took me a while. 

Rich 16:43
I Other lessons do you have for us today? Um. 

Lana 16:46
Oh, yesterday me and Mommy were teaching Leyla how to clap. 

Rich 16:52
Oh, really? 

I. I got. Let me see. Let me see. You clap because I. If you can clap. Good, good. I can snap your fingers. All right. Have you talked? Leyla has snap her fingers yet? No, no, I teach you something. So you can do this right? And you can clap like that, right, girl? A guy. 

Lana 17:18
Like that? 

Rich 17:19
Yeah. Now, girl, I guess. 

See, you're getting a lot better. Yes. Your first time I for those of you listening, I always do a thing where I snap my fingers and clap my hands and always challenge kids to do it. But Lola's picking it right up at the end. So you're like, is. 

Oh, wow. I wonder, wasn't that good? 

Oh, yeah. Well, I. 

Oh, a little competition here, huh? Yeah. You're ready 

to play? Let me go back to that. I like, you know it just for that, I'm going to get you a whole gallon of milk because you did so good. I mean, water. Water? Well, you don't like water either. It's water too spicy enough. Oh, man. I'm learning a lot. Who was telling you all this stuff? 

Lana 18:19
Oh, you mean. 

Rich 18:20
I mean, who's teaching all these things about spicy milk? You all? No one. No one. 

Lana 18:26
Spicy. 

Rich 18:26
Milk is spicy. Okay, I can't, I. I'm going to when I get home, I'm going to have to throw away all that milk. Although I don't drink milk, I like almond milk. Why don't you like almond milk? 

Lana 18:39
Because I like almond. 

Rich 18:41
You don't like almonds? Have you ever. You know, it takes forever to make almond milk. I sit there and squeeze those on. I've never gotten any milk from them. Yeah. So 

how about cashew milk? 

Lana 19:00
Yeah. No, no, no. 

Rich 19:02
Cashew cashews and nut cappuccinos. I don't. 

Lana 19:07
Like. 

Rich 19:07
Coleman's. We don't like cappuccinos either. Do you? 

You're nine years old. I hope you're not drinking cappuccino yet. 

Lana 19:15
I don't. 

Rich 19:15
Just coffee? 

No. She knows. No. So. So what year did you actually start? Layla's gift. 

Shari 19:24
Believe it or not. 

Rich 19:25
Got it right that time. She didn't throw me off. 

Shari 19:29
So believe it or not, we launched April of last year. So it's been a year and a half. Yes, but it's been in my brain for some years now. 

Rich 19:37
Okay. Yeah. It's something I like to ask people, especially starting five or one C3, because sometimes it can be a hit. It. Sure. How long did it take you to actually get your favorite one? She three started. 

Shari 19:47
About four months. 

Rich 19:48
Get out of here. Really? Yeah. Who did you know? 

Shari 19:51
And God, that's you. 

Rich 19:54
That's it. I knew it took us six months, so. Yeah, Yeah, four months. That's pretty. 

Shari 20:00
Good. It was amazing. I think all the stars aligned because it's really a mission that is not needed. Not only needed, but also a purposeful. 

Rich 20:10
So what she's tried. 

Shari 20:12
I'm looking at her, she's like, Oh, I got this now. 

Rich 20:14
So what is show off? So what is the mission. 

Shari 20:18
We advocate for is support and celebrate children with special needs and disabilities as well as their families. 

Rich 20:24
Oh, so it's not just for Jacob Jacobson. 

Shari 20:27
Oh, no. It's for every child that has special needs. 

Rich 20:31
Really? 

Shari 20:32
Absolutely. 

Rich 20:33
Why, yes, you do need a building. 

Shari 20:35
Oh, yeah, we need a building. 

Rich 20:37
So what are some of the things that you guys actually do. 

Shari 20:40
Man? So for Advocate, the port, the portion of advocacy in the mission, we which is extremely important. So we have a campaign where we're on the news to bring attention and awareness to this cause and the need for the cause. We also have an emphasis on caregiving. So there is a lot of work to support caregivers as well from that perspective. And then leading into the support part is understanding and educating the community on all of the support needs of this community, be it accessibility, be it emotional, be it physical, all of these things, so that that happens with the support. And then the core part of what we do is the celebration. So I was not the only parent in the situation where every year was uncertain. And I learned that through my journey. So we throw free birthday parties and milestone celebrations for kids that are special needs and that's awesome. Yeah. So we've partnered out with Port Discovery. We have monthly celebrations there. We've also done. 

Rich 21:44
Down the City. Yeah. 

Shari 21:45
Okay. Discovery Children's Museum, It's fantastic. I mean, I. 

Rich 21:48
Didn't realize it was still. 

Shari 21:49
There. We have. Oh, man. Yeah, it's alive and kicking. 

Rich 21:52
That's yeah. 

Shari 21:54
So we're doing our monthly celebrations there, and then we also have celebrations and pockets elsewhere of the parents can't make it to the museum. Right. And during the celebrations, we provide free party favors, free cake, a gift to the child, and our really beautiful Leila's gift box. If you've seen it online. Um, I. 

Rich 22:13
Would say the gift boxes look like the logo. Oh, yeah. Oh, yeah. 

Shari 22:17
Oh, yeah. And they're really easy for the children to open, so they don't have lollies over here messing around with something. I don't know what's going on, but. 

Rich 22:25
All right. 

Lana 22:25
Oh, Mosquito Bay. 

Rich 22:27
Oh, did you get them, Skeeter? No, no, look. 

Shari 22:34
So the box is really easy for the children to open. They don't have to unwrap gifts or anything. It's a string that they pull and they lift up, and it's really colorful and bright and inviting. Yeah. 

Rich 22:46
That is. 

Shari 22:46
Awesome. Thank you. 

Rich 22:47
So with that, well, with all the stuff that you do, do you guys have a lot of volunteers? 

Shari 22:54
We're definitely. 

Rich 22:56
La la. 

Shari 22:57
Besides LA La. She's she's one of the biggest advocates of that. We just had a back to school night this week in Harper County at one of the schools, and about 50 parents and families came out. We gave out 50 Leila's big box celebration boxes for back to school filled with her book Zagel B, which is an imagination book, crayons, colored pencils. I know we haven't thought about that quite yet and fidgets and all types of different bubbles. Exciting things. Yeah. So we had a great event this week, but these are the things that we do for the community. And then we also have community events. We had something called Play Your Way Family Fun Day, which was an outdoor fun day for all abilities, free to the community. We had clowns, magicians, cotton candy, music deejay. Wow. Yeah. Vendors. Yeah. 

Rich 23:48
We're doing we're doing these things. They're all different places. 

Shari 23:51
Yeah. We try to make it around different areas within Maryland, but because we're from Harford County, we're really looking to now bring it more into into Harford County than we have before. But we're working with hospitals and schools and the businesses is like Port Discovery to bring bring light to Lila's gift. 

Rich 24:12
Have you do you do anything for other nonprofits as well? 

Shari 24:16
We're actually starting to get there. We've reached we've reached out to some and some have reached out to us in the year and a half. Rich, It's been phenomenal. We've grown so much and so many people are just eager to work with us. And it's it's really overwhelming and in a positive way. And we're growing so we're always looking for volunteers. We can never have enough. For instance, we have United Way is one of our Grant awards and they reached out to us a few weeks ago and selected us as one of the nonprofits for their Ravens annual Ravens Call to Action. Oh, yeah. Okay. So we're on Monday. We actually have an event where people are coming out and making handcrafted celebration cards so we can put them in the boxes. So we're doing a lot of things like that. So volunteers are always welcomed. Donations obviously are always welcomed. And like you said, the next big step for us is getting our own footprints in the community through a celebration center. 

Rich 25:19
I love it. So, Lalah, when you help out, what's your favorite thing to help out with 

making news? 

Lana 25:28
There will be books. 

Rich 25:29
What is a Zigbee book? 

Lana 25:31
It's the imagination Books. It's an imagination book with five fun stories. 

Rich 25:38
Wait a minute. So it's imaginary. So the book's not there? 

Lana 25:42
No, it's kind of an imagination book because you draw your own pictures and. 

Rich 25:48
Oh, so you have to use your imagination. Oh, yeah. I would have already not done good with this, would I? Because I would have been looking for a book that I can't see. 

So you are has this work. So what is it like a book with blank pages? 

Lana 26:06
A book with blank pages, but it has words on it and you have to you have to match your drawing with the words. 

Rich 26:15
You have to match your drawing with the words air quotes. There's so. All right. Explain to me. So like, if I go to a page, what's some of the words that might be on there like 

today? 

Lana 26:30
My to fill out. 

Rich 26:33
Did you find it? 

Oh, that's a word that would be on there. Yeah. Oh, Oh. So then you have to draw like a picture of your tooth or your tooth falling out or maybe like an aardvark running by and grabbing your shoes as you can tell, your teeth found out it fell out. Right. And when you make these books, how do you really how did you come up with this idea? 

Lana 27:01
So when COVID was around in 2020, Mommy told me to, like, get off electronics, tablets, TV, all that stuff. 

So I got some crayons and some paper and I started writing and I started drawing a book. And then I went in Mommy's room. For some reason I forgot. And then when I came back. 

Rich 27:26
To find her tablet, right? Yeah. Like, probably. Yeah. 

Lana 27:30
And when I came back in my room, Layla was trolling on my pictures. 

Rich 27:36
She was. 

Shari 27:37
And that was the first time she had seen Layla maneuver in that way. And she was just so excited. 

Lana 27:43
And then I called Mommy over and she was like, Oh my gosh. And then later that night asked, Mommy, can we like, make an imagination book? 

Rich 27:53
That is brilliant. Yeah. So how many of these imagination books have you made? One Just one. 

Shari 28:01
One one series. 

Rich 28:04
And which had you come up with the name Zigbee. 

Lana 28:07
So I think zero means cool and bees. 

Rich 28:12
So you like bees, but you don't like mosquitoes. 

Zigbee I like that. Now, are these books, are they published? Yeah. Self-published. Yeah. Really? 

Lana 28:24
For 1295. 

Rich 28:27
Well, okay, wait, hold up. How old were you when you did the first one? 

Lana 28:32
Six. 

Rich 28:33
Six. And that's where she published her first one, correct? 

Lalah. I'm sorry, Miss Alana, do you know what you are? 

Lana 28:44
Yeah. What? 

Rich 28:47
Well, yeah, but on another note, do you know I mean, something bigger than an author? 

Lana 28:52
Superstar. 

Rich 28:53
Superstar? Well, yeah, you are superstar. You're an entrepreneur. 

Shari 28:59
That's right. 

Rich 29:00
You know what an entrepreneur is? Or since you wrote a book, I like to call them author printers and an entrepreneur, somebody that starts your own business. And you started your own business by doing this book when you were six years old, doing single bee books. 

You've only you've only done one so far, right? So when's the next one coming out? 

I'm But No one series. You said. 

Shari 29:29
One set. Yeah. So she has one book. It's it's called Zigbee and it has five stories inside. Okay. 

Lana 29:36
She's going to make one that's Halloween themed. 

Rich 29:39
Oh. 

Lana 29:41
And, um, I'm going to try to make it on my computer and then show Mommy all the stuff. 

Shari 29:50
She wrote the stories, and she. She asked me, Can you help me make an imagination book? And I thought it was the most genius thing. 

Rich 29:59
I've ever heard of. 

Shari 30:00
Yeah, me either. And she's. She's been on. She's been in People magazine. 

Rich 30:06
Who? And. Yeah. Can I have your autograph? Yeah, you can. I can get my picture taken with you, and then you sign it. Can you show me how you got signed? Yes, I'm a phone. 

Lana 30:18
I can sign. 

Rich 30:18
It. You are a superstar. 

You can say 

she writes cursive. Most kids don't anymore. I know you can write in cursive. Oh, come on. Are you serious? What are you in third grade? 

Lana 30:41
I've been writing cursive since I was, like, in kindergarten or first. 

Rich 30:47
I. So you've been writing cursive. You published your first book when you were six. You are very smart. Did you know that? 

Shari 31:00
And I'll add caring. She she always comes out to every single event. She's part of every celebration that we have because one of the big parts of our mission is to bring different families, multiple families, into one celebration because children like Layla usually don't have friends. So when you bring multiple families in, they have different people to play with. And Lorna joins every single celebration with the children. 

Rich 31:28
That is awesome. But I'm proud of you, not just met you. I'm proud. That is that is very impressive. I you're just like you're a star. 

Lana 31:38
Thank you. 

Rich 31:39
Sure. I mean, just mind blown. I can't believe it. I should have known we were able to do that right away. No problem. Other still don't get the spicy milk thing, but that's okay. That's probably in one of your Zigbee books, isn't it? I want to see somebody draw spicy milk. Oh, that's a good one. 

Yeah. Uh huh. So something very important. I should have asked you this in the beginning. Let's find what's the website so everybody can go make a donation. 

Shari 32:14
Leila's gift dot org. Layla spelled l i ela. So it's L. S gift dot org. 

Rich 32:23
Very simple to remember. And everybody tell everybody why it's important that they make a donation. Do you know what a donation is? Okay. Why is it important that everybody needs money to Leila's gift? 

Lana 32:34
It's important because I'm. 

I was going to say something above, but I forgot what I was going to say. 

Rich 32:45
That's okay. You can ask for Mom's help. 

Shari 32:49
Why do you think it's important? 

Lana 32:53
Because then we're able to make more gifts for special needs kids. 

Shari 32:59
That's a good answer. 

Rich 33:00
Yes, it is. 

Shari 33:01
It helps us push our mission and helps us continue to advocate, support and celebrate. And, you know, Lonna just made a video recently about what she finds special about Layla and what is one thing that she's found challenging through this journey. Because I always like to really bring it from the sibling voice as well. And one thing that she said, Do you want to tell Mr. Rich what you said? 

Lana 33:27
Go ahead. So one thing that I said was like, when I tell like people from my school, friends and staff and teachers and when I told them I have like a special needs sibling, that was like, Oh, I'm sorry, when there's really nothing to be sorry about. 

Rich 33:45
You know what? Thank you for saying that seriously, because one of the things I've always said and and I get this from my cousin. I told you I had Down syndrome. Yeah. Number one, I hate that word disability. Yeah. To me, it's a different it's a gift or it's a different ability because we can learn so much from them. And there are things that they can do that we can't. 

Shari 34:11
We can't. Absolutely. 

Rich 34:12
It's amazing. And I've always said this, when you see somebody with Down's syndrome, when they smile to me is the most beautiful smile in the world. 

Shari 34:22
It's infectious. 

Rich 34:23
Yeah, it is. It's it's amazing. You were okay. Mom's the executive director right now. Or are you the executive director? Leila's gift. 

Lana 34:35
Leila is. 

Rich 34:36
Oh. Oh, I like it. Layla is. She's the silent partner. So where would you like to see Leila's gift since you just start a year? Not even a year ago. No, A year ago. 

Shari 34:49
A year and a half? Yeah. 

Rich 34:50
Where would you like to see it in five years? 

Shari 34:52
Oh, my gosh. All over the world. All over the world. We have big plans. There are things that unfortunately, I'm not at liberty to talk about just quite yet. 

Rich 35:00
But changes have to come on. 

Shari 35:02
That's right. But changing the world, we want to start with celebrating children just like Leila. I, too don't like the word disability. Uh, but unfortunately, it's how the world connects with that situation. So definitely changing the context around the word disability, I look at it more of this 

disability. This disability, right? It's it's more about emphasizing that disability is very different than the ability that most of us have. And I fully agree with you, Rich. Our children are adults that have different abilities. They're superheroes. They have gifts, they're phenomenal people. And if we take the time to just understand and educate ourselves, I think the world will be a greater place. So that's that's a big part of Leila's gift. But then also support piece is really what's coming up next in terms of our five, ten year planning is how do we provide that extra support for the community that they very much need now? 

Rich 36:11
Is this your first nonprofit that I'm not that you started but that you've ever worked with? 

Shari 36:17
Yes. Really it has. It has. I'm actually, you know, by my career, I am a global vice president of a medical device company. Uh, and I've been in this. I've been in the school. 

Rich 36:31
I know where you get your brains from, 

what's left of it. 

Shari 36:37
But, you know, I've been I've been in the manufacturing of pharmaceuticals and medical devices for about 22 years now. Really? Yeah. And I you know, it's a story I like to share where in my career there's always that notion of identifying what is the unmet need in the world and working with the and the science to bring that to life. What I do is quality and regulatory, which making sure that we bring it to life and commercialize it in a compliant regulatory, um, facing manner. So I've done that my entire career. What's different about this? Right? When you think about there's an unmet need and it was my duty to help fill that unmet need. So this is my first nonprofit. Yes. I've never sat on a board at another nonprofit or anything. This is just, uh, a trigger for me based on my journey with Lila. And I always say, you know, for those that are not spiritual, I'm sorry to bring God into it. But for those that are, hopefully this resonates with you. God gave me Lila. Yeah. To start this mission. I truly believe that. And we will not stop until good. We are successful. 

Rich 37:57
Now, do you go out because I know you've gone and talked on TV radio that 

conversations with LA on this podcast here. Oh, do you actually go out and speak to other groups, whether it be nonprofits or, conference conferences or anything like that? 

Shari 38:16
Every opportunity I have, I jump at it. So yes, please, if you have an opportunity, reach out to our website and send send that information. And I'm more than happy to attend. And yes, answer your question. I have, um, I'm, I'm a huge advocate, not just for Lila's gift, but for the community in itself. 

Rich 38:35
Yeah. Wow. So 

with Lorna here, when she graduates. Mm. I guess thing you're going to have to step down and seed for her to take over. 

Shari 38:49
Yeah, it's funny, we were packing 50 boxes the other day because it's a family affair, Right? 

Rich 38:54
So, like, 50 gifts. 

Shari 38:55
50 gift. 

Rich 38:56
Boxes. Wow. 

Shari 38:57
Yeah. And, you know, I got to show you the video, which is actually on our website, too. Um, on our social media. But Lorna said Mommy was a good helper, and I said, you can't really help if it's your business, too, right? I mean, you're you're part of this, a core part of this. And she's learning very early on her own terms, right? I don't force her to do any of this. I always tell her, Do you want to do it? I'm not forcing you. And she's like, yes, I want to do this. And she she gets involved and it's really from the heart and it makes me so proud. 

Rich 39:33
You just make people smile all the time. Yeah. 

Lana 39:36
Yeah. 

Rich 39:37
I know. I'm. You made me smile and laugh and. And made me look bad because you could do this right away. And you taught me something new. Do you want to be a teacher when you get older? No. No. Oh, you're a to answer that. No. You just. 

Lana 39:55
Want to be a pediatrician and. 

Rich 39:59
Witch and. 

Lana 39:59
Ash and that. And the astronaut who works for NASA. 

Rich 40:04
Wait a minute. Hold up. Back up a minute. 

How are you? Nine and a pediatrician. Hmm? Yeah. Okay, I. And I think somebody is pulling my leg. I think you're, like 30 in a small body. I mean, you wrote a book. You published your book. You're an entrepreneur. You want to be a poet. Most people, nine years old, don't even know how to say pediatrician. 

Why do you want to be a pediatrician? 

Lana 40:37
Because I like helping kids and people like me. 

Rich 40:43
So. And then you want to fly to the moon to help them on the moon. That's why you want to be part of NASA. Mm. Okay. 

Shari 40:51
I know we were talking the other day. We said maybe there's a pediatrician in space. I don't know. Maybe we can combine it into a single role. But, yeah, that's your. 

Rich 40:59
The space station. You never know. 

Shari 41:00
You never know. 

Rich 41:01
Where they're on Mars. The Martians have pediatrician on Mars. Oh, here we go. 

Lana 41:10
Science is said soon. When? Like, like in, like a couple million years, everyone's gonna move to Mars. 

Rich 41:23
Would you want to move to Mars? Yes. In a couple million years. You know how old to be? Yeah, you'll be a million. 2 million. 

Lana 41:32
And I'm going to be to. 

Rich 41:34
It, huh? In 2 million years. How are you going? Wait a minute. You can't go back. 

Lana 41:40
Words? Yes, because I'll be reboot. 

Rich 41:43
Oh, is that right? Okay. Okay. I was wondering about that man. You're just blow me away today, Women. What else don't I know that you know? 

Lana 41:59
I know a lot about space. 

Rich 42:05
Like what? 

Lana 42:06
I like a lot. 

Rich 42:08
A lot. 

Shari 42:09
Ask her a question, Rich. 

Rich 42:10
All right, so you're ready for this. How long does it take 

to eat a milky Way? 

Lana 42:24
A realistic question. 

Rich 42:26
Then, is, is it a no, not. 

Lana 42:28
Realistic fiction? 

Rich 42:30
That's not. You talk about space. Haven't you heard the Milky Way? 

Lana 42:34
Yes. 

Rich 42:35
Okay. 

Lana 42:36
We live in the Milky Way. 

Rich 42:37
Okay. Have you ever had a milky Way? 

No. Eat the milky. I ate a milky Way. I've eaten Milky Way several times. 

Shari 42:50
Was the milky spicy? 

Rich 42:52
Yeah, And it wasn't spicy. All right, so let me see a question about space. How long does it take to get to the moon? Mm. 

Lana 43:02
In like, 

in 

in earth years. I mean, in earth time, it'll probably feel like a couple hours, but in space time, like three days. 

Rich 43:19
All right, That was too easy. I got a harder question for you. You ready for this? And it just went out of my mind that quick. 

Lana 43:26
Okay. 

Rich 43:27
That was not okay. Apparently, I saw a squirrel run by or something because I forgot what it was that threw me off their name. 

Shari 43:34
The planets. 

Lana 43:36
Mercury, Venus, Earth, Mars, Jupiter, Saturn, Uranus, Neptune. 

Rich 43:41
All right. Don't you think they ought to make Pluto a planet again? 

Lana 43:44
Yeah, yeah, yeah. Not because it's dwarf planet. 

Rich 43:54
Okay, so Pluto's vertically challenged. No biggie. 

Lana 43:58
There's a lot of dwarf planets that used to be planets. So. 

Hmm. 

Rich 44:05
Now that I could go so many different ways. Well, I know, I know, I know. All right, Ask me because I can answer anything. 

Lana 44:15
Okay. 

Rich 44:21
She's thinking hard. 

Lana 44:24
Oh, 

what's that little dot on Jupiter called? 

Rich 44:32
The little dot on Jupiter. It's a that. 

Lana 44:35
No. 

Rich 44:36
Yeah. Huh? It is. You just called it a dot. 

Lana 44:39
Oh, no. 

Rich 44:41
What did you say? 

Lana 44:41
Circle part. What is. 

Rich 44:43
The circle? 

A crater. 

I answered your question. 

Lana 44:53
You. You. It's a type of storm right in the world. 

Rich 44:58
Like a hurricane. 

Lana 44:58
Jupiter. 

Rich 45:00
Okay. All right. Let me ask you this. I remembered my question, Miss Science. The sun rises in the east. Right? But The moon doesn't set right. But you can always, you know, So you're. The sun comes up, the moon is gone. But how come sometimes you can see the sun in the moon the same time in the sky? 

Lana 45:22
Mm hmm. Okay. No. 

Rich 45:25
Well, yeah, I want to know. That's why I asked you. 

Lana 45:28
Because when? 

So let me ask you. You know this, did you? 

Rich 45:37
Oh, because you can't answer that. Yes. 

Lana 45:39
Oh, it's going to be related. That. Okay, I'm going to answer. Okay. You know, the moon doesn't have its own light. 

Rich 45:45
Right? It gets its light from the sun. 

Lana 45:47
Okay. Yeah. 

Rich 45:49
And unless you're up there and you clap it's got the clapper, 

it doesn't they don't have the moon. People up there don't have lights. No. So you can. And it turns on the lights in the house. Oh okay. I'm sure you sitting here like I had no idea this was going to go this way. It's good. 

Lana 46:10
Yes. It's giving you. Here's the first reason. It's because the moon's giving you a sign that it's really early today 

and it's because they share the same light. So sometimes it goes like that. 

Rich 46:24
Right? That's what I said. Didn't I. 

Lana 46:26
Know? 

Rich 46:27
I. 

Are you sure? 

Lana 46:30
You said, do you have a house on the moon? 

Rich 46:32
I mean, actually, if you had a house on the moon. I did not. I said the moon. People had the house there and they have lights in their house. 

Lana 46:39
Yeah. That's what I mean. Right. 

Rich 46:41
Because otherwise how are they going to see in the dark 

actually. Does the moon have its own sun. 

Lana 46:50
No. 

Rich 46:51
It doesn't measure. Is there water on the moon? Do you know I have water from Mars. Oh 

I do Jersey on top of my hair. Before they went out of business, somebody went, Oh, yeah, they got me a bottle of water from Mars. Mars was a grocery store. So I tell everybody I got water from Mars. I do. I was sitting here astonished. That's okay. So, Sherry, all these interviews you've been on, I love I love to ask, especially when people have been on several different interviews. Sure. Is there anything that a host has never asked you that you wish they would have asked you? And it's a very good question. What would that question be and what would be your answer? 

Shari 47:39
Wow. 

Rich 47:40
Hmm. 

Shari 47:42
It's the first time I'm actually stopping to think in an interview. And let's see, 

I think you touched on some really good questions. I think the one that you mentioned earlier around what was your mental health like? Is a very important one. And I think it's one that is also part of why we're doing what we're doing for caregivers. The one thing 

people always bring attention to is you're the mom. You're the mom, which I am. And I hold that badge very proudly. But There's a difference between a mom and a caregiver, and there's a balance. And I hate to say I'm a caregiver because at the end of the day, these are my babies and I'm always going to care for them and parent for them. But there is a very different element when it comes to caregiving. And caregivers, in my opinion, have not been able to speak up about it because whether they feel 

shame about it, whether they feel guilty about it, whether they feel like they don't want the ridicule about it, there's a lot that comes with caregiving, and I'm part of a lot of groups and you see us and myself included, right? But you see people like us that are giving medication all day, taking children to speech, going through emergency scenarios that they weren't planning for, dealing with emotional outbursts by the children, not showing how, not knowing how to manage it. These are all things that come with that caregiving part, that you're still a parent, you're still a mom, you're still a dad, you're still a grandpop, you're still grandma, you're still a guardian. But there's a different level of attention that's needed not just for the child, but for the caregiver itself. And the and caregivers often experience burnout. They experience isolation, and there's not enough support, in my opinion, for caregivers. And that is that is really one of the big things behind Leila's gift is bringing light to the need around caregivers and allowing them to have resources for emotional support. Physical support, right. And I don't mean massages and things like that. I mean absolute, you know, infrastructures that can help support children and families with children that have special needs. One one question that always comes to us is respite care. And before and after care, there's not a lot of programs in our community that will accept a child with with different abilities and special needs, equipment and things. So how can you be a working parent and provide for your family if you don't have the common resources that most of us do, most people do? And these are things that Leila's gift is out to and recognizing that I'm one of those individuals where luckily, you know, I have a position where I can be remote in most cases and that's how I've been able to manage in these last few years. But and then I have a great support system. My husband is fantastic. They're my ex-husband, their dad is fantastic. So that's important. It's very important. And I have a great support system, but a lot of people don't have that. So what do you do in those scenarios? And then again, it goes back to that caregiving aspect where if you don't, if you can't work and you're relying on a minimal Social Security check to get by and you have a child that's there with you all day dealing with emotional outbursts, not getting the right care, and in some situations right, because you can't afford the that's necessary. The insurance is very basic. All of these things. How do you survive? Imagine the mental health deterioration. 

Rich 51:35
Yeah. 

Shari 51:35
That that occurs. And this is this is a part I have not been able to speak on to this degree, but it's part of this caregiving unboxed that is part of the Leila's gift mission as well as unboxing and unwrapping these these very necessary topics to talk about. 

Rich 51:55
What you definitely going to have to come on again. Thank you. Especially when you can talk about the other things. And one of my co-host has is me to do like a we've done roundtable podcast, whether it be on mental health, we've done it with entrepreneurs, we've done it for authors. But I would like to do one for nonprofits because with you starting your nonprofit in only four months, that's amazing. 

Shari 52:23
Thank you. 

Rich 52:24
And every nonprofit's different. But a lot of nonprofits work together. 

Shari 52:28
Yeah. 

Rich 52:29
So, Lorna, I'm going to give you the time now. All right? I'm good. You ready for this? Yeah. I'm going to allow you to interview Mom and ask her any questions. I'm about Lila's gift, okay? No, you're not allowed to ask her about boys or anything like that. Okay? Just want to make sure I got that clear. 

Lana 52:56
Okay. Um, 

uh, 

do you think Layla's gift is as a solution to 

all the problems in the world about special needs? 

Rich 53:23
Well, wow. 

Shari 53:25
That's powerful. 

I think it's part of the solution. There's no such thing as the solution. But if we all work to be part of the solution, we can surmise the total solution. Very good question. 

Rich 53:43
Very good question. 

Shari 53:46
She asked me yesterday. She said, Rich, mommy, if you could figure out how to bring Layla out of her syndrome, would you? 

And I said, No, I want Layla to stay as a she said, Me too. 

Rich 54:03
I, I had a gentleman on is the question. If he could go back in time because he has two daughters with special needs and said if you could go back in time and change anything, you would you? He said, absolutely not. Well, because he 

you don't number one, you don't know how they would be. Yeah. You know, it could be something else. Um, you're learning from it and you wouldn't have Leila's gift helping other people right now. 

So. Yeah, I mean, it's what? Yeah. Another question. Oh, I'm sorry. Go ahead. Go ahead, Go ahead. Ms.. 

Lana 54:48
Law, does Layla's gift make you happy? 

Shari 54:51
It does. It makes me fulfilled. Just. Just the event, Even this week that we had and I had an opportunity to speak to the parents who are also, again, caregivers. And, you know, my on that and just being able to speak to them very fluidly and transparently. There were a lot of tears in the room. And then afterwards there were a lot of emotions and hugs. And I had individuals coming to me that I've never met before, adult individuals saying, We need you. We need this voice for us. And that in itself touches you, right? Absolutely. Absolutely. 

Rich 55:27
Does it make you happy? 

Lana 55:29
Yeah. 

Rich 55:29
Okay. Do you have any more questions? Oh, no, go ahead. She's taken over. 

Lana 55:36
Would you ever. 

Rich 55:38
Want. 

Lana 55:39
Layla's guest to be involved with the mother company? Like. Like another nonprofit? 

Rich 55:48
You mean working together? 

Lana 55:50
Yeah. 

Shari 55:51
Absolutely. I think there's power in numbers and. Yeah, absolutely. And you know, the question you posed to me earlier, which about. Oh, so you're not only focused on Jacobson, it's more broad. Yeah, absolutely. And I think a lot of nonprofits are specialized there. There's autism specific, there is Down syndrome specific. And I think working with the likes of these nonprofits that are specialized with us on a more generalized perspective really has some power as well. 

Rich 56:21
Oh, yeah. And I've seen it in the addiction world I spoke about when do you have Rage Against Addiction? And all these nonprofits are pulling together to help and advocate together as well. And that's the strong thing. 

Shari 56:34
There you go. 

Rich 56:34
When when your mother can get with other nonprofits and advocate, go down to Annapolis and speak to the politicians and try to make well, not try and make a difference. 

Shari 56:47
Hmm. 

Rich 56:48
Power in numbers. 

Shari 56:50
Absolutely. 

Rich 56:51
I'm sorry. Did you have more? Okay, good. 

I told you. Conversation. Oh, look at that. Conversations with Alana. 

Lana 56:58
What's your goal for Layla's gift. 

Rich 57:01
Huh? Man, I already asked that. 

Lana 57:03
Oh. 

Rich 57:04
I'm in five years times, but go ahead. You're fine now. Oh, I think so. What is your goal for? 

Shari 57:13
How about I flip that to you? What is your goal for Layla's gift? 

Lana 57:21
Um, my goal for Layla's gift is, 

um, that it gets bigger. And, like, the meaning for that is, um, 

like, people were will understand us, like Layla and us, um, like, know us, right when they see us and stuff is brand recognition. 

Shari 57:56
Yeah. 

Rich 57:57
Hm hmm. 

Shari 58:01
Being a household name, when you hear Layla's go. 

Rich 58:04
And everybody knows what it is, they associate the logo right away with it in their mind. Mm hmm. And their mission. Yeah. So let me ask you something. Do you like asking any questions, or do you like to be asked the questions? 

Lana 58:20
Both. 

Rich 58:21
Both. So you are going to take my job for. 

Lana 58:25
I like answering and aren't. 

Rich 58:29
Answering. 

Lana 58:29
Answering questions. 

Rich 58:31
Because I cannot either. Yeah, that makes sense because I was answering the difficult one. Jason. Yeah. 

So Alana, I'm going to ask you now, since I actually had to ask, you know, I did an ish while sort of ask you, is there anything you would like to tell everybody 

to. 

Lana 58:54
To send donations to Layla's gift and to support us 

and to, um. 

Rich 59:09
Keep me hanging here? Yeah. Yeah. Hi, Pop. 

Lana 59:12
So, 

um, it's about Zigbee. 

Shari 59:22
And I don't think we mentioned that. So the sales from Zach will be get donated to Lila's. Good. 

Rich 59:29
Oh, okay. And they can purchase the degrees from the website. 

Shari 59:33
They will be dot com as a separate website. 

Rich 59:37
You have your own website too. Or how do you spell Zigbee z i. 

Lana 59:41
G g l e b e e. 

Rich 59:45
Dot com? Yes. Did you create the website? 

Lana 59:50
Kinda. 

Rich 59:50
Kinda. You created the book, right? Yeah. So all, so all the proceeds go to Layla. Yes. Awesome. So all you listening go to Zigbee, not Zigbee. Zigbee. Right. Dot com purchased the imagine not the imaginary books, the imagination books. Right. Because I would think something like that is not just for children, for adults too. 

Shari 1:00:19
It's for everyone. Yeah. We've we've actually had because she's, she's had her own campaign around Zigbee and we've had tutors and everyone um, getting the books and they came to us and said this is great for word association, people struggling to, to understand word associate it's really great for tutoring, is great for artists, is great for creativity is great to connect people that otherwise can't be connected like Layla and Lorna situation. So it has it's multifaceted in terms of how you can use it. 

Rich 1:00:48
So is there an age when people can start using the book? 

Shari 1:00:51
We typically say around three. 

Rich 1:00:53
Really? 

Shari 1:00:54
Yeah. 

Rich 1:00:55
Hm. Interesting. I think I, I think I see a lot of them books being purchased. 

Lana 1:01:01
You ask me more. 

Rich 1:01:03
Can I ask you more questions? Well, I think what we need to do is save it for you to come on again. Oh, because there's a lot of stuff about Layla's gift that we can't talk about yet. They're going to have to talk about in the future. Right? Did you like doing this show? Would you? Come on, Will you bring Mom with you to Mom's? Got to bring you right? Or do you know how to drive right? You know how to drive. You better stop. You're messing with me. 

Lana 1:01:33
No, I know what the, um. Um. You know, the, um, speed thing, like the speed limit. Yeah, I know about that. 

Shari 1:01:42
You know the rules of driving. 

Rich 1:01:43
Can you reach the gas pedal there and look out the window at the same time? Yeah, The front, the windshield. Yeah. And steer. Yeah. I'll think you're pulling my leg. 

Lana 1:01:56
I know for the speed limit, if you let's say it's like 60 and you go and six, you can go five more. 

Rich 1:02:10
Pushing the limits 

better. Whoops. Here if Gaylor listen to this episode, 

you're going to be following me. We'll be looking for Alana. Where's that little girl? And I know she's driving around here somewhere five miles over the speed limit. Sherry, is there anything you like to add? I can't remember if I issue that or not, because a lot of it threw me off. 

Shari 1:02:32
No, I honestly, it's it's about thanking you for the opportunity. 

Rich 1:02:36
Pleasure. 

Shari 1:02:37
The more things do like this, the more that we can spread the word. And, uh, we're extremely grateful for the opportunity to talk about Layla's gift. And even Zach will be, because there's a big part of. Of that in Lila's gift. Zach will be the mascot. So, um, you know, and. And the last thing I'll say is, the sibling part is really important to you. Heard Elena say she wants to be a pediatrician. That doesn't just come out of anywhere that comes out of her experience with Layla as well. And we've we've found that in this community as well. The siblings of those that have special needs often want those caregiving type roles when they get older as well. So there's something magical here that's brewing and continuing to come to fruition that we're very excited about. 

Rich 1:03:20
And if people get a Layla's gift, that or they can make a donation. Yes. For those of you listening, there's also something that Sherry is looking for and hopefully you can help her out. And that's a building, right? 

Shari 1:03:36
A building, Yes. And Harper County, we want a building to throw our birthdays and milestone celebrations here in the backyard of our community, as well as provide resources to families and really start to catapult our mission even further locally. 

Rich 1:03:50
About 5000 square. 

Shari 1:03:51
Feet, About 5000 square feet. 

Lana 1:03:53
Maybe you could use a warehouse. 

Rich 1:03:56
Well, you could actually or depending unless you want a kitchen. 

Shari 1:04:00
We do want a kitchen. Yeah. My my husband's a chef, so he donates his catering to our events. 

Rich 1:04:07
Really? Yeah. 

Oh, we got to talk. 

Excellent. Well, Sheri, Ms.. Long, I want to thank you both so much. Thank you. Thank you for everything you're doing. Thank you. And, Alana, stop getting smarter than me, okay? Why do I have a funny feeling when. When the next time you come back to be on here, I'm going to be sitting in your seat and you're going to be sitting back here. You're going to be the host. You're going to be running the board and everything. Oh, we got all my co-host. You fired me.