162 – Bailey Pratt, Father of Three, Co-Founder of The Jiselle Lauren Foundation, Named After His Daughter with Rett Syndrome

Transcript:

Tom Couch: Special, thanks to horizon therapeutics for sponsoring today’s special father’s network, dad to dad podcast, working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics, mission at horizon therapeutics .org

Bailey Pratt: if you meet her, she’s smiling, she’s warm, she’s giggly. And she’s just an infectious personality and she’s a beautiful little girl. And I think she provides that perspective and that warmth to everybody that she interacts with it. So she’s just a beautiful bar of our family that makes us. We wouldn’t change a thing as challenging as it is because she’s just that bright light in our family.

Tom Couch: That’s our guests this week, Bailey Pratt Bailey, and his wife, Jill are parents to three children, including Jiselle who has Rett syndrome. We’ll hear the Pratt family story, including the founding of the Jiselle. Lauren found. That’s all on this special father’s network, dad to dad podcast say hello to host David Hirsch.

Hi,

David Hirsch: and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the special

Tom Couch: father’s net. The special fathers network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.

New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great one. Dad’s to support dads to find out more, go to 21st century dads.org. And

David Hirsch: if your dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group.

Please go to facebook.com groups and search dad to dad

Tom Couch: and now let’s hear this fascinating conversation between Bailey Pratt and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Bailey proud of Franklin Tennessee. Who’s the father of three, a vice-president of performance optimization at Ascension health and co-founder of the Jiselle Lauren foundation.

Bailey, thank you for taking the time to do a podcast interview for the special father’s network.

Bailey Pratt: Thanks, David. I’m really excited to get the opportunity to talk to you today and, and really good to learn more about you guys. And you guys learn a little bit more about us

David Hirsch: ex. You and your wife, Jill been married for 11 years and the proud parents of three bow to Genevieve three.

And Jiselle six, who has Rett syndrome, a rare genetic neurological disorder that occurs primarily in girls. Let’s start with some background. Where did you grow up? Tell me something about your family.

Bailey Pratt: My family is originally from Mississippi, but we moved to Chattanooga, Tennessee when I was in kindergarten.

So for me, most of my memory. Current Chattanooga, Tennessee. And I’m the youngest of four siblings. And we were all up kind of a sports family there in Chattanooga. And we really enjoyed our time and still my family, everyone except myself, are in Chattanooga and work in Chattanooga. Um, the outcasts that, that, uh, drove two hours away.

And we, we live in Franklin, which is just a suburb of Nashville. And so, uh, we, we were just a sports family and I played baseball. My brothers played baseball. My sister did a lot of things and we were just your typical family that grew up in Tennessee. I enjoyed our time

David Hirsch: there. Excellent. So I’m curious, what did your dad do for a living?

My

Bailey Pratt: dad was Hank hill when his first profession, he bought a propane business from his father when I was really young. And then as I was older, maybe in my twenties, he and my brother started a home building business, which is what they currently do now. And so they build homes. Actually, my dad, my brother and my other brother are the CEO, the CFO, and the COO of a large home building business in Chattanooga.

I have learned how to build really good homes at Chattanooga and that’s what they do next. Excellent.

David Hirsch: So I’m sort of curious now, how would you describe your relationship

Bailey Pratt: with your dad? So my dad and I I’ve had a really special relationship kind of throughout my time. I was born on his birthday. So we share a birthday, which is pretty neat.

And so we have that connection and he was my coach growing up. So we coach we playing baseball or football or basketball, and actually walked on and played in college at a small division one school. And I ended up transferring a senior to another division one school. And that was another connection for my dad.

Now, you know, we’d always talk about sports, what was going on with the team. And so as I got older, We always had sports and primarily baseball for that common connection. And then as I transitioned to work world, my dad and I’m the youngest of the four started playing more golf and I happened to love golf.

And so we still share a deep bond around golf. So we’re, we’re constantly talking to each other about when the next time we’re gonna play and who’s better than father or son or who won the last game. And so that, that is our relationship. And it’s one of that I really value. Just from a father, son, and he’s also a mentor.

So he provides a lot of guidance and thought leadership for me in any decision in my life, whether it’s personal or professional. So we have a great relationship and he’s really, you know, the CEO of my board of directors for, for me as a human, both in my work world at home. So well, that’s a

David Hirsch: great testimonial to dad and I’m being born on his birthday.

You were a birthday gift to him, right?

Bailey Pratt: That’s right. I was

David Hirsch: just starting. But you do have a special relationship with a family member when you are always sharing the same birthday together. So from what I remember, you played baseball in college, you did three years in Birmingham, and then think he transferred to Miami of Ohio.

You took a degree in business, and then you have an MBA from Vanderbilt university. And I’m wondering when your career was getting off the ground. My recollection was you started at Ernst and young. Uh, what was it, where did you think you were going? Yes.

Bailey Pratt: When you got a great recollection and got great notes of my history and you’re right on.

When I started, you know, I had this conversation with my parents when I was a sophomore in college, I think there was a desire to be a doctor. And when I got into be sophomores are taking some business classes, I quickly realized and taking some of those pre med classes. I realized that my personality, my skill set, my strengths and my passion.

Probably aligned with being a medical professional and quickly learned as a sophomore. Not sure I did. And it was a very immature, probably 19 year old that business and accounting or something that I enjoyed. And so really I got into accounting because I thought it was a more specific business degree, which would just get me into the business world.

And my dad had his own business and didn’t have an accounting degree. And he said, son, you always met. Having an accounting degree and it doesn’t mean you’ll be an account of the rest of your eyes, but you’ll, you’ll really learn the foundational language of business. And then you can go from there.

David Hirsch: My recollection was that, uh, you met Jill, your wife at Miami of Ohio, and I’m sorta curious now, how did that happen?

Bailey Pratt: Yeah, it’s actually a pretty funny story made for podcasts, but we met when I was in Birmingham. I mean, she was actually, we were in Miami, had Birmingham Southern playing Miami for a weekend series and she was roommates to the one person I knew that went to my Ohio, which was a high school friend of mine.

So we met randomly on all baseball weekend in Miami and was a sophomore really didn’t think too much about it. How about we just continue to talk and he ended up dating and then as luck would have it, or fate or God planned it for us. Was it the end of my junior year and my school decided not to be a division one program anymore.

And so we actually all got a blanket release. So going into my fourth year, I had the ability to transfer somewhere in there. I wasn’t a superstar, but I had the ability to walk on somewhere. If I wanted to. And I had the ability, knowing that Miami, where my girlfriend was at the time now wife had her gray accounting and business school.

So I’d be really proud of the business degree that I would get. Plus I had the opportunity to walk on and play for a program that was also pretty good as well. So we took a leap of faith as another decision spent some time talking to my parents, mom and dad, and then went to Miami. Senior and played our last year there.

It took me a fifth year graduated cause I transferred to a senior, but fortunately for myself and my wife, that relationship lasted. And now we’re, you know, I’ve got that family of three beautiful children and two dogs. And, um, I certainly wouldn’t have ever thought that would have happened, but you know, life takes you in some pretty awesome places.

David Hirsch: Yeah. Well, thanks for sharing. That’s wonderful stuff.

So what is red syndrome and how did the diagnosis come about? Brett’s

Bailey Pratt: has a very rare genetic disorder. It’s not hereditary. It happens on a certain. Chromosome and hand really far journey. Her oldest daughter has named started simply not achieving certain milestones around a year. Uh, not setting up, not doing some of the things that, you know, as just, she normally develop before a year.

We wouldn’t have thought anything other than maybe just to check you baby. And that’s pretty typical. But after a year, uh, our pediatrician and our family started realizing we weren’t hitting certain milestones. So we started entering physical therapy and certain therapies to try to get her back on. And we’re still in those therapies today, but around two, the therapies weren’t really showing the progress.

I think the pediatrician wanted, and we’re fortunate to have a very good health system for children here in Nashville. We get referred to see a bunch of specialists in Vanderbilt and do a bunch of testing, um, blood work imaging, what I call diagnostic a bunch of different things, and really didn’t know how it all explored.

I remember thinking at one time it could have been a brain tumor or something of that variety, but we did a lot of that testing around the ages of probably two and really didn’t find anything. And then around two, between two and four in that age is we’re continuing therapies, which you would do anyway.

Cause you, you would continue to try to make progress. Our pediatrician introduced to were called rats to us. And we, we knew very little about it is very rare, primarily occurs in girls based on the makeup of the chromosome. And it has a stereotypical. Function of hand ringing. So if you, if you know anyone, there’s a kind of a repetitive hand motion that happens with a lot of girls with threats.

And my daughter did have slight use of that when part of that journey. And so wasn’t until four that we actually did a full genetic profile and got the diagnosis and learned that it was truly Rett syndrome. It hasn’t changed anything that we would have done differently. If you go look, educate yourself on rats, you still do a bunch of therapies.

You still do a bunch of things to try to improve the life of your daughter. It just makes you aware of some of the challenges. It’s a really fairly new disorder, meaning it’s probably been around forever, but just newly found in the last 30 or 40 years. And so still learning a lot about it, I think, and life expectancy and different things of that variety, but it certainly changed our world.

I mean, my daughter is six. We sat in this fall. I would be foolish to think we know everything. We’re still learning from those we’ve networked with. And in general, just learning about rich families and such, we’re still learning about what all, I mean,

David Hirsch: well, thanks for sharing. Um, it sounds like, uh, it was something that wasn’t like all at once, but you had this gradual understanding or realization that there were some delays, these milestones that you were made reference to, and that, uh, you know, Solution, if I can call it, that is just certain types of therapy, right?

Regardless of what the actual diagnosis became, you know, there’s a lot of the things that you’d have to be doing along the way to make sure that your child is developing, you know, as fully as possible.

Bailey Pratt: That was probably if I had to do some retrospective, that might’ve been one of the tougher part. It’s not really knowing.

So we, I don’t know. I’m sure you’ve done it. David you’ve encountered a lot of these stories where we still have a lot of hope, right? So she was still making progress. I wasn’t Lisa mounted progress and it wasn’t keeping up with her age group, but she was getting a little stronger and a low muscle tone is a very common symptom for Rett syndrome.

So she was making a lot of physical therapy. Improvements. They were small, but we, until we got a former diagnosis, we still had a lot of hope, which was both a good thing and bad thing. Right? So you were both very hopeful that she would do a lot of quote unquote normal things, but also realizing that she wasn’t quite normal.

And so we were living in that limbo. I think that was just part of the natural grieving process. That was definitely a struggle for us because I know we were pushing her to do, to achieve everything and really hoping she would. And then we, you know, once we knew there’s a former diagnosis, you know, most kids are very hard-nosed non-verbal kids.

Um, some can walk some cannot, but there’s a very wide spectrum, but there is still a kind of a Ramblers around what you kind of know your possibilities are. Although we’re still pushing them. And we actually entered a clinical trial of antibody. I think there’s enough. And I’m not a medical professional, nor am I the most knowledgeable in clinical trials.

But I think based on the way Rett syndrome is tagging. There is hope that there may be a cure or some version of making symptoms better. We did in our trial. Uh, we ended up having to exit for other reasons, but where there’s potential improvements in symptoms in girls with rats, which gives hope that there may be a cure one day.

I don’t know enough about the medical side of that, to know how that is about to think. There is hope that is something that can be treated over the, you know,

David Hirsch: That’s fabulous. So I’m wondering if there are some fears that you’ve had or still have, as it relates to raising a child with a certain ability.

Bailey Pratt: Yeah, I would say are our fears, um, at first were just, and maybe they weren’t fears. Maybe they were just part of grieving. It’s just not being able to experience the natural things that adults get to grow up with. So, right. So our daughter will does that will live with us likely for the rest of her life and, and not be able to experience living on our own, making her own path and really will be dependent on us.

And. Some form of physical health, her rest, her life. And so I think I was scared, but I think that the realization of that was probably the most. I mean, I don’t know that that’s gotten necessarily, that’s gotten better, more relevant. We understand what that is, but as she gets older, there’s still a lot of fears about what if she outlives us, right?

Or what if it starts transitioning to different Ty fears. Um, but I think, you know, given where she is the first couple years were really well, she’s not going to achieve the normal milestones, all that we’re pushing her to achieve a highest capability of what she can, because there is a watch spectrum.

There’s no reason why she can’t do a lot of things. There’s a talker that, uh, she can stare at and learn a language by doing an eye gaze device. Well, we’re going to keep pushing her cause that’ll give her a way to communicate. So I think there’s a lot of things we’ve learned that maybe have less than for years.

Um, but we still have those general fears that I think you’ve probably encountered a lot with special needs is, you know, if we get hit by a bus, if in all these kind of practical things, you know, as she becomes a young woman had, what does that mean? There’s a lot of things that just come with having a special needs son or daughter that I think we’re.

You know, it’d be in seven years, there are Darwin six or seven. We’re still in the process of comprehending and probably won new fears in the next couple of years. I mean, so

David Hirsch: yeah. Well, very authentic. Thank you for sharing. And, uh, you know, there, there are stages in life seasons in life chapters. However you want to think about it.

And I’m part of them are associated with the. Age chronology and just the natural development, hopefully as the years go by, you can put these issues in perspective and that, um, you know, you can try to focus on living in the moment as opposed to worrying about the past, which we can’t change and getting too far out into the future, which is, you know, at some level it’s not bad to anticipate, but it’s not healthy to dwell on all the things.

Might happen, right? Because a lot of those things never happen anyway. So you don’t want to Rob today by focusing on tomorrow, if you

Bailey Pratt: will. Yep. And David, I thought of one other thing, um, you know, this is maybe personal for me, not my wife, that the school system is phenomenal and my daughter does L loves interacting with other children and she, although she’s not verbal, she’s has a very receptive language.

She loves to smile. She. She really loves being around other humans as specifically as you’d love being around other humans, her age. So her school group, her kids, she loves being at school. So I’ve never really thought about it. Maybe when you asked it triggered, there’s a fear that I have is what are we going to do after high school?

Right. And maybe she’ll go to college. Maybe she won’t, but what is she going to do for that same social interaction when she gets out of a school system? Cause I, you know, when they become. I’m actually not sure what the structured system is for special needs kids. And, you know, she has a great system today where she goes to school, she’s learning and she’s interacting and she’s happy.

Like what’s going to happen when that’s not there. And that’s her fear that probably didn’t even know existed until I, uh, had a low introspective into your question there.

David Hirsch: Yeah. Well, a good observation. And uh, I think being part of the network, the special father’s network. There’s so many dads that, you know, are, um, five years or 10 years or more ahead of you, right.

Who’ve already charted that path. Um, how could that not be of some assistance or some help to you to, you know, learn firsthand? Um, Um, approach the decision-making, you know, you’re not going to have to solve this all on your own, and while you might not have any family members or people in your immediate, you know, work environment or neighborhood that are familiar with the circumstances, you know, I’m hoping you can tap into additional resources, um, that we can make available.

And, you know, other resources that will become known as the years go by.

Bailey Pratt: And I think that’s a beautiful point. We’re so young in our journey that we’re still learning about all the very resources that are out there, like your organization, where we’re, we just don’t even know exist. So we’re, we’re just learning and enjoying learning about the different organizations that connect people to talk about these different things that are going to happen with, as you said, as, as our daughter gets older, there’s just going to be different challenges along the way.

And it would be great to be able to tap into the people that have already experienced it. Right. So that’s kind of before.

I personally am just trying to live and how to enjoy the moment of everything she brings. She’s having a special needs. Kid has brought a different perspective to our family. We’re just trying to enjoy it. It’s very difficult. We have to go through him. He’s here because we have a week and how many places we have to be and all the challenges we have, but at the same time, it’s brought us such a wonderful perspective.

And I would say if you asked me this three years ago, when we were learning about special needs, the answer wouldn’t have been the same, right? Yeah. Over the last three years, I’d say we we’ve really come to accept and really value what this little kid can bring to us and our family and all around her.

And so we’ve just tried to enjoy the journey as typical as it is, and it takes a village or we’ve got a village that helps us. We have good days and we have bad days and we just try to strain more good days than bad days. And it certainly has provided us perspective with our other two kids and kind of life in general too.

So we kind of come through our grieving process to really appreciate what does Al brings to our family. And, and, uh, she’s just a special kid.

David Hirsch: That’s fabulous. So I’ve heard over and over for more seasoned dads that they wouldn’t ask for something like this, whatever the something is. But reflecting on their experience, they wouldn’t change anything, which is a pretty profound statement.

So I’m hoping that that that’s your destiny as well, that, uh, years from now, you know, when you have a little bit more of an opportunity to look back, um, the journey that you’ve been on that, uh, you might embrace that as well. Cause, uh, you know, there’s certain things that you have control over and, um, many things that we don’t, and if you keep dwelling on things that you don’t have control over, you know, How’s that going to change times, right?

How’s that going to improve your quality of life for the outcome? It’s not about, I think you’re on a good path and I’m really pleased to hear that. And, uh, at the risk of focusing on the negative, I’m wondering from your perspective, or maybe from Joel’s perspective, what do you think the biggest challenge or challenges have been?

Bailey Pratt: Yeah, I would say, um, lack of communication. So my wife might say the lack of mobility. I think the lack of being able to tell us what she needs and we’re working on our journey with that eye-gaze device. I mentioned, but I think the biggest challenge is not being able to know she’s generally a well-behaved kid.

So I think she could easily cry and have a lot of negative emotions. She really doesn’t. She’s very happy and smiley, you know, but she can’t tell us when she’s called. She can’t tell us when she has to go to the bathroom. We’ve learned systems of trying to take her every two hours and largely she can use the restroom.

Uh, appropriately, but I think the lack of communication is probably the hardest for us. Cause you don’t hear, you know, you don’t hear your daughter say, you know, mommy, daddy, those kind of things. I would say lack of communication is probably the, the biggest tournaments I’ve had. My wife might say the mobility.

I think if she could walk and do a few things more on our own, it might open up more doors to, and those are two really hard times. Those are kind of a higher level at a more concrete level. Uh, you know, we have a speech therapy on Monday morning at, uh, seven 30 to actually OT. I have to remember OT on Tuesday morning.

We have speech and physical therapy on Wednesday. We have feeding therapy on Thursday and we have another speech therapy on Friday. So I would say, and this is largely Jill. My wife has done most of this championing is having. Get the full amount of resources to help her chief, our maximum potential. And it requires a lot of resources, both financially.

It takes a lot of energy to do all of these said things and it takes a lot of, uh, because she doesn’t have good use of her hands and she can’t do all the things around. It takes a lot of your own physical energy to, to get her to these places, to carry her around, to get her engaged in these activities.

So that’s also a big challenge too, as well.

David Hirsch: So I’m wondering. What impact is all situations had on her younger siblings, your marriage, or your extended family for

Bailey Pratt: that matter? Yeah, I think, um, for my I’ll start with the younger siblings, I think back to that perspective, I think our younger children and my son is two and still kind of learning what special needs mean.

But I think for my daughter, who’s four and she’s in. Uh, early childhood programs with other special needs kids. I think having a sibling with special needs provides her with a wonderful perspective. I didn’t have this growing up. I didn’t know. I think it’s just back home back to lack of limited, direct knowledge of experience with special needs.

I didn’t have it. So my daughter has a perspective on that special needs family, and I think it makes her a better. Sibling, I think it had had David, I think you told me this in the pre-interview I think as she gets older, there’ll be jealousy issues. There’ll be all kinds of things. Right. Cause my oldest daughter will require more attention, but I do think ultimately it provides her with a better perspective on life and what’s important in life.

And I think even though she’s only about to turn four, I think she already realizes that it’s made her just a better all around human. And so I think. I think that’s true for my siblings. And I would say my immediate family, we’ve all kind of pitched in to this. And I think we’ve had some other, um, things in our family that we’ve encountered.

And I think this is just another very large one. That’s kind of pulled us together. What’s on what’s important and really just celebrating all things in life. I think she’s been, and if you, if you meet her, she she’s smiling. She’s warm, she’s giggly, and she’s just an infectious personality and she’s a beautiful little girl.

And I think she does, it provides that perspective and that warmth to everybody that she interacts with it. So I think has been a huge influence that back to our set, our perspective on our, our family and, uh, started to my wife. And I’d say we can, we can’t imagine her life without her as challenging as it is.

She’s just a beautiful part of our family that makes us better. Right. And to your point, I wouldn’t change a thing as challenging as it is because she’s just, she’s just that bright light in our family. That’s

David Hirsch: fabulous. So I’m thinking about supporting organizations and I think we talked previously about Rhett university and international Rhett foundation.

What do those organizations do? How have you benefited from them?

Bailey Pratt: So my wife has interacted more with Ray university and they’ve provided a lot of resources on specific knowledge and training around Rett syndrome and things that are out there for, uh, kids with rats. And so they, we have. We have a personal, every Friday, a lady that specializes in red eye gaze communication who works, which is home.

And they’ve connected us to resources like that. International Rett syndrome organization is very similar, does a lot of phenomenal things. I connect with them about two or three years ago when I had this idea. And I know we haven’t quite gotten there yet to start a foundation and a golf event, and they have a wide network.

And board directors really trying to advance research on finding a cure for Rett syndrome. And they’ve got a lot of families and dads and moms that have put on fundraising events and do a lot of things to help the Rett syndrome community. And they’re putting on a hat, they went on a hiatus for COVID, but they’re putting on actually your.

And the next year an event, that’s a convention for our weekend for reds paying families to come and learn and network and meet other people. So they do a lot of great things in the Rhett’s community. And then the international restaurant is more around research. Um, and then the university has more about resources from, from what our interaction is.

I don’t want to misquote those organizations, but from our interaction. And that’s really how we’ve used them. And they’ve been phenomenal.

David Hirsch: Excellent. So let’s talk about, uh, this organization that you, Angela founded called the Jyzelle Lauren foundation, which I understand you started, uh, in 2019. What’s the mission?

What’s your vision for that group?

Bailey Pratt: Yeah, the story behind this is probably one that, um, isn’t probably is one. I would not have envisioned five years ago, 10 years ago, 15 years ago. Um, but as we were on that journey, we talked about earlier, I play a lot of golf and I told you, I played golf on my dad. And that is our, one of our personal things.

My wife grew up around a family that played golf. And so it was about three years ago as we were learning, we just said, how cool would it be to have a golf event that’s celebrating. Jazelle and the warmth in that bright light, uh, it gets our families together to celebrate her at time. We weren’t even really sure for what, right.

We just, we really thought about how cool would it be to have a golf? Well, what that’s transpired into is that we’ve started on with the business background, my wife and I have, we, we did a little research and tried to figure out what that meant. We decided to. Oh a corporation that was a nonprofit from a tax standpoint with a mission.

That’s pretty simple. It’s not specific to red syndrome. So you heard a lot today about what my daughter has. We have. We’re calling in our heart to help anybody with special needs that needs help. So we started with a very simple golf tournament and we’re really young. We’re two and a half years old going on three, one of our third event this year, our events called scramble for smiles.

That’s where it started. And then we came up with a foundation concept and it’s really a day to fundraise and really celebrate chisel and then fundraise to help any family in the special needs community that needs help to provide it. Our first, our goal, our first year was just to raise enough money to pay for incorporating fees and things of that variety.

We were extremely fortunate through our support system to raise upwards of $40,000 in our first year. And then second year we kind of match that. So actually in our second year, we were able to provide. Around 13 families and two organizations help with whatever they need in that range from devices. So we, we actually got two girls with threats syndrome, those Huggies devices that I mentioned, how we paid for a lot of medical bills, the families that are dealing with whether they were testing around.

Medical things or whether they were therapies, additional therapies they couldn’t pay for, or wheelchair upgrades that needed to happen. We, we did not limit herself to anything other than someone in the special needs community that needs to help. And we, that is our mission and values to celebrate her and help anybody that needs it in that community.

When we originally thought it would just be in Nashville and then we opened it up and with technology today, we helped a family in India, which was really neat. And we got to pace time with them and see the impact that our little organization did for them. And, and this is part of the reason we’re coming on podcasts.

Like this is we’re learning how to fundraise. Our background. We also learn, we have to let people know that we have funds to help. So we want people to know that we exist so they can reach out to us and ask for help. We know that’s really hard to do, but we’re trying to build an organization that is there to help.

And it’s pretty simple, that’s it? David and I was a long-winded answer, but it’s really to help anybody in that special needs community that, that needs it.

David Hirsch: Well, it’s amazing that you have three children. Which is usually very, uh, challenging, right? Because you’ve gone from having a, what I think of as a man on Mandy offense to his own defense, because they outnumber you children on number of the parents.

And, uh, you know, just balancing work and family issues, uh, is challenging enough for most. But in addition to coming up to speed on Rett syndrome and all the things we’ve been talking about that, uh, You and Joel are doing to help dissolve you found the time somehow some way to look beyond your own situation.

And it’s just amazing that you’re able to do that. And what a great role model you are to so many others. So thank you for the work that you’re doing, and I hope God continues to bless, bless you. And, um, all those others that are.

Bailey Pratt: Thanks, David. Yeah, we really certainly didn’t envision this. And if you, if you asked me to let knew anybody five years ago, I doubt they would have projected.

Jill. And I would start a foundation and tilapia will ask us as the decel alarm foundation to help Rozelle personally with her situation. And it’s not right. It’s the intent is to help others because we feel very fortunate with the support system we have and we recognize how challenging it just flat out is.

Um, but it’s been extremely fulfilling to us. To be able to make a difference, but this foundation has really been something that we just have gotten infinite reward back from as much as we’re trying to help people. I think it’s been a bigger reward for us, but our longterm goal on, I think I might have told you this is maybe create something that our kids, when our other kids wants to do when they get older or it’s, it’s, it’s something that goes beyond us because that would be really neat to create something that helps beyond just our little passion.

And we’re just both really proud of what’s called. With our foundation.

David Hirsch: That’s fabulous. Well, um, I can see from my perspective, that part of it is therapeutic, right? Uh, you made reference to the fact how satisfying it was and how meaningful it is to you. And I think it helps put your own situation and perspective, but.

Engaging with other families and helping them, whatever way you can, you know, you just want to try to have an impact on people’s lives. Like you said, it’s not for Jiselle’s benefit directly. Um, but uh, it’s going to benefit a lot of other people. So my hats off to you. So I’m sort of curious to know why is it that you’ve agreed at such a young age to be a mentor father as part of the special father’s network?

Bailey Pratt: I, I think connecting with other folks and providing knowledge and resources. I think this, I don’t even know a David in my personality is very outward processing as far as work and talking through things. And it really started with my dad. We talked a lot of people and get to perspective a lot of different things.

And I hate to say this, but I feel like I’ve learned throughout my life that talking to people, counting their experiences and figuring out how they relate to me and, or vice versa. I’ve been really important thing. Concept of mentors, as you mentioned, and that ability to connect, whether it’s asking for help or giving help has.

To me because it, like I said, it plays a big part in my decision making and that’s a practical answer, but the reality is for me, whether in any life decision, when you get enough input of people who’ve been through past experience, you kind of start to figure out what is the best course of action for me and said to him, Just come back to my daughter.

I think as I get older, I’m going to have to think about that fear of what to do after high school. And I’m hopeful with organizations like yours and others, that there will be people that have been through it and they can say paly here’s, here’s some cool things we’ve found or here’s how we processed.

They’re all your fears and vice versa, same type kitchens, mentor someone younger that’s in that stage when I was, when my daughter was two. I can provide that perspective of what we went through. And, and I know that if I had connected probably earlier and still learning how to connect with more of those resources, it would have helped me through my journey when I was, you know, four years ago when my daughter was just starting that journey.

I think the answer is a long-winded answer, but it’s just been so much ingrained in part of my life that I just excited about the ability to help and connect.

David Hirsch: Well, we’re thrilled to have you. Thank you for volunteering. I’m wondering if there’s anything else you’d like to say before we wrap. The

Bailey Pratt: one thing I would say is just, you know, we are truly a very brand new foundation and organization.

We know what a challenge it is, and if anybody needs help, we just ask that you reach out to us and let us know how we can help. We are just in the infancy stages. And that certainly it goes to fundraising. If someone has a calling to help with, with what we’re doing from a fundraising perspective or likes to play golf and wants to come to Tennessee, we’d love to have you.

Or if you know somebody that. Wants to play golf or fundraising, or wants to be a part of what we’re doing or call to it. And or if you need help, we’ve learned, I probably didn’t realize this. When I first started, you got to work just as hard to find families and let people know that you’ve got resources.

That is also obviously a huge part of what we’re doing. And so we just ask if there’s anybody that’s listening to, to reach out, go to our website, reach out to my wifi directly. We’re just trying to help her, whether it’s personal or whether it’s getting resources. We’re here. That’s where y’all are to try to help and connect and, and grow and be a family and community.

And, and, uh, I think that’s it, David.

David Hirsch: Excellent. So if somebody wants to learn more about the Jiselle Lauren foundation, scramble for smiles or Rett syndrome, how would they go about contacting.

Bailey Pratt: The easiest way. We’ve got our website, which is the Zelle Lauren foundation.org. And there’s a connect button. There’s newsletters.

That thing of that variety. They also could email my wife as well, um, which we could provide mine. My email is Bailey dot Pratt. It does, it does that. Lauren foundation.org. And my wife has chilled opera. The, the LRN foundation. We also have a Facebook and Instagram page out there, but the main thing is go to our website and you’ll, you’ll kind of see where we’re connecting.

And we’re here. And so we’re very accessible and ready to help, whether it’s you’re called to fundraise and donate, or whether you’re, you know, someone that needs help we’re here.

David Hirsch: Well, we’ll be sure to include that information in the show notes. So it’s as easy as possible for people to follow up with you.

Daily. I just want to say thank you for your time. In many insights as reminder, Bailey is just one of the dads. Who’s part of the special fathers network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation on your own, please go to 21st century dads dot.

Thank you for listening to the latest episode of the special fathers network data dad podcast. I hope you enjoyed the conversation as much as I did, as you probably know. The 21st century dad’s foundation is a 5 0 1 C3 not-for-profit organization, which means we need your help to keep our content three to all concerned.

Would you please consider making a tech selectable contribution? I would really appreciate your support Bailey. Thanks again.

Bailey Pratt: Thanks

Tom Couch: David. And thank you for listening to the dad to dad pod. Presented by this special father’s network. The special father’s network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for fathers to support fathers go to 21st century dads.org. And

David Hirsch: if you’re a dad looking for help, or we’d like to have. We would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad also, please be sure to register for the special father’s network biweekly zoom calls held on the first and third Tuesdays of every month.

Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@twentyfirstcenturydads.org

Tom Couch: that dad to dad pod cast was produced by couch audio for the special father’s network. Thanks again to horizon therapeutics who believe that science and compassion must work together to transform lives.

That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics horizontherapeutics.com.