One in a Million: Blakelee’s Journey with Rare Disease and Resilience

In this episode of This Ability Podcast, host Mary Baudoin sits down with Latasha Holt, a mother, educator, and advocate in Acadiana, to share her family’s journey navigating an ultra-rare medical diagnosis. Latasha opens up about her daughter, Blakelee, who is living with isolated (central) adrenal insufficiency—an exceptionally rare condition affecting approximately one in one million individuals—alongside epilepsy. Together, they break down what this diagnosis means medically, how it differs from more commonly known adrenal disorders, and the challenges of receiving answers when no clear triggering event is present.

Latasha also offers an honest look into daily life managing complex medical needs, from medication routines and emergency preparedness to the emotional and psychological realities faced by both parent and child. She reflects on Blakelee’s perspective, the importance of building strong support systems, and the role of advocacy in raising awareness for rare diseases. This conversation highlights resilience, preparedness, and hope—while providing encouragement and practical insight for families navigating similar journeys and for listeners seeking to better understand the lived experience behind rare medical conditions.

Transcript

Mary Baudoin (00:00):

Thank you all for joining us today for this episode of This Ability Podcast. I'm your host, Mary Baudoin. And joining us today is our guest, Latasha Holt, a mother, educator, and advocate in Acadiana. Thank you so much for being here today to tell us your family's story.

Latasha Holt (00:15):

Yes, thanks so much for having me.

Mary Baudoin (00:17):

Absolutely. So tell us a little bit about yourself.

Latasha Holt (00:20):

I'm a mom to three amazing girls, and I'm a professor in the College of Education and Human Development. I primarily focus on teaching teachers to teach reading. I also have special education in my background. I've been teaching for 19 years. I taught elementary school for 10 years. Elementary was my favorite grades of all, but I've been in higher education for the past nine. Besides teaching, I'm an advocate and a volunteer. Some of the things I get to be a part of, I am on the Lafayette Library Foundation Board. I'm also on the board for Danny's Dose.

Mary Baudoin (00:56):

What is that?

Latasha Holt (00:57):

Awesome. So it is a group that works to advocate for emergency care for rare patients.

Mary Baudoin (01:03):

Okay.

Latasha Holt (01:04):

So I can share more about that. I'm also on NORD. I am a state ambassador for Louisiana. That stands for the National Organization for Rare Disorders. And then I get to do other cool things like I'm a volunteer for Make-A-Wish. We were a Make-A-Wish family, so I give back to them. And I also work with Hospice of Acadiana.

Mary Baudoin (01:24):

Do you have enough hours in the day to do all this?

Latasha Holt (01:26):

Listen, but I'm very thankful except grounded, so I'm really thankful.

Mary Baudoin (01:30):

Yes. And it sounds like everything that you're working on makes a huge impact from being a teacher and teaching the teachers, teaching students, and being involved in these wonderful nonprofit organizations. It's very commendable. So thank you for your service to the community. That's incredible.

Latasha Holt (01:45):

Thank you so much.

Mary Baudoin (01:45):

I know you mentioned that you have three daughters, right?

Latasha Holt (01:47):

Yeah. To three girls.

Mary Baudoin (01:48):

What are their names and their ages?

Latasha Holt (01:50):

Awesome. So Blakelee is the youngest. I try not to say baby anymore, because she's 15. I have a 19-year-old named Hailey, and then I have a 21-year-old named Chloe.

Mary Baudoin (02:00):

And I have to say, it's pretty amazing because I'm looking at you and you look like you're in your 20s.

Latasha Holt (02:05):

Thank you so much.

Mary Baudoin (02:05):

I'm like, "How can she have a 21-year-old?" You look phenomenal.

Latasha Holt (02:10):

Thank you so much.

Mary Baudoin (02:11):

Your daughter, Blakelee, does have a rare diagnosis of adrenal insufficiency and epilepsy. It's a very rare condition. And I know you sent me a few numbers and I did look at the website as well. It's really staggering. It's estimated that just one in one million people have this condition. So can you tell our audience a little bit more about what isolated central adrenal insufficiency is?

Latasha Holt (02:36):

It is so rare. And to put it simply, adrenal insufficiency means that the body doesn't produce enough of the hormone called cortisol, which is essential for survival. So you might've heard of cortisol before, but cortisol is so important because it helps to regulate blood sugar, blood pressure. It's what you use when you respond to stress like your fight or flight. And it's really important when your body is sick or if you're fighting an infection, really is important to survival. And she doesn't make that hormone or she does very little.

Mary Baudoin (03:09):

There's also an epilepsy component to that?

Latasha Holt (03:12):

Absolutely. We go back and forth. Of course, if the body is having dangerously low blood sugars because of adrenal insufficiency, you're going to have a seizure that's the body's way of expressing something's going on.

(03:24):

We live in silos. So sometimes when I talk to one doctor, they'll say, "Oh, I think it's the adrenal insufficiency." And then when I talk to the endocrinology department, we'll say, "Oh, they think it's the epilepsy." We officially have a diagnosis for both of those things. And as the last few months have shown, really are seeing that it is a true diagnosis of epilepsy. So those are both very complex conditions. And then when you put those together, we really have complex issues to try and overcome.

Mary Baudoin (03:50):

So is it rare for someone that has the adrenal insufficiency to have epilepsy?

Latasha Holt (03:57):

Right.

Mary Baudoin (03:58):

She's got this combination that's even more rare.

Latasha Holt (04:01):

Even more rare. And we went through a lot of time of trying to figure out. Thank God, there's no tumor. She did cancer, all the difficult things. She was just truly born with not making the cortisol. It started about two, but then we have this extra component of epilepsy. So they really do work. They're very difficult. Yes.

Mary Baudoin (04:21):

One of the questions I wanted to ask you is, how is it diagnosed, especially if there's no triggering type of events?

Latasha Holt (04:27):

Yeah, absolutely. So what happens is that they call it central adrenal insufficiency because the problem is not necessarily in the glands themselves, it lies more in the brain. Pituitary gland in the brain normally tells the adrenal glands, "Okay, make cortisol," which is at a different part of the body, right? It just isn't sending the right signals, and that's why it's called central. It's isolated because it's just that one hormone. So you might've heard of ACTH, that's where we have things like Addison's and Cushing's disease. I can talk more about that later. It's very isolated into that one part. So for us, we saw about two years old, I saw her kind of declining and there wasn't a reason for it, like dangerously low blood sugars. She'd had a seizure in the night at two and I was like-

Mary Baudoin (05:13):

Was she hitting her milestones as far as-

Latasha Holt (05:16):

She did.

Mary Baudoin (05:16):

... physically growing and-

Latasha Holt (05:18):

Yeah. All of that. We've had all those milestones and there's a couple of different kinds of adrenal insufficiency. I'm so thankful we don't have cancer, we don't have other scary types, things that so many others deal with. When she was two, I found her on the floor. She had a seizure in the night. So what had happened, I went to Arkansas Children's Hospital, which was, I lived in Arkansas then, about an hour and a half from where we live. And when we went there, we went to the ER because her blood sugar was like 30, 40, like low, even with snacks.

(05:47):

And so I can remember being in the ER that first time, her blood sugar just kept dropping. And so it was kind of like that episode of ER. I think people remember that show where they're like bust through the doors and we were admitted to ICU. But I can remember it was really strange because the doctor was like, "See the phone on the wall? You need to call your family, you're going to need them." And I was like, "Okay, we have a healthy, happy little two-year-old, what in the world is going on?"

(06:12):

And we went into ICU and I can remember them asking me questions like, "Did she get into insulin?" And I'm like, "How does one just get into insulin?" It was so rare because they were giving her this glucose in her IV and it really wasn't raising her blood sugar. They didn't really know what was going on. And it wasn't until she was seven years old that we ended up getting a diagnosis.

Mary Baudoin (06:33):

Wow. So for five years, it was kind of a mystery?

Latasha Holt (06:36):

Absolutely. So we would wake up and she would be unconscious. Her blood sugar would be 20, 30. We would carry her to the hospital. We lived in rural Arkansas, so they would DTN glucose IV and then they would med flight us or we would go by ambulance to Little Rock and then we would get there and they would keep giving her glucose, like DTN in her IV. And that happened anytime.

(06:57):

So the body kind of says, "Hey, we have a problem before there's a problem." It starts working on it. So she might start plummeting and then we find out, oh, it was a kidney infection or a urinary tract infection or a cold that she was getting. But during that whole time when she didn't make the cortisol, she would just continue to get sicker and sicker and sicker. So we would have to basically stay in the hospital until we got through whatever and they would just run these tests and they would be like, "Okay, brain scans. Why is this kid struggling?"

(07:25):

The nutritionist came in, like, "Is she eating the right foods? Are we doing all of the things?" She was just frail. And if you follow me online, you can go back and see this little frail kid. We went through food therapy. We had so many scans, dozens of doctors look at her. But one day, I mean, and I guess I had kind of given up, not on her, but given up on finding an answer because it just didn't make sense.

(07:47):

So I'm a researcher. So I had read and we had talked and I drew pictures. Yeah, I'm doing the things to try to figure it out. They would say, "Oh, she has hypoglycemia." And she did, but clearly it wasn't something that we could address. This doctor came in the room and she's from Texas and she said, "We'd had another episode over the five years we'd had." And she said, "I've been looking at the years of files that you have." There was a new way that they were looking at the blood. She said, "I think I've seen one other person like her and I think I know what she has." And we were like, "What?"

Mary Baudoin (08:21):

The sky's opened up.

Latasha Holt (08:22):

The sky's opened.

Mary Baudoin (08:22):

And angels was singing?

Latasha Holt (08:23):

I have a photo of her getting her first dose of cortisol in an IV and that day totally changed our lives. We have never been the same because now we had a name for this ultra-rare condition. We had a plan and we had hope and we had some answers that we've been looking for.

Mary Baudoin (08:39):

I'm listening to you talk and your family has certainly gone through a lot of the trials and tribulations of the mystery of finding out what the diagnosis is, but how are you holding up mentally?

Latasha Holt (08:51):

So it's so hard because as a caregiver, I mean, I have two other children. And when we were in the hospital, like a lot of families, it's travel time. I wasn't in my hometown. I was a teacher at the time.

Mary Baudoin (09:02):

Were your other daughters with you guys?

Latasha Holt (09:04):

They would visit, but they would be back home school. We were far from family, which made me feel, I mean, a wonderful hospital who quickly became our family, but we felt, kind of definitely felt isolated. My big girls, I call my big girls, they know how to pack a hospital bag. They're great hospital bag packers. They know how to do that. But definitely, I can remember just my faith and trying to find an answer. That was big piece. For so many years, I just felt like I'm missing something, some kind of ... And as a parent, I'm like, "Okay, I'm a failure." You just feel that failure, even though I know I'm not. Just not being able to find the answers. It's so discouraging.

Mary Baudoin (09:37):

Sure. I think a lot of parents go through that too, a guilt trip like, "I could have done this, I should have done that." But it sounds like you guys went through a series of doctors too. So many first opinions, second opinion.

Latasha Holt (09:48):

Dozen of opinions. And it's a research hospital. So wow, there were rounding, there were dozens of eyes looking at her and looking eyes and kind of scratching their head like, "What in the world's happening?" A little more common is Addison's disease. So I don't know if familiar, but-

Mary Baudoin (10:00):

I'm not.

Latasha Holt (10:00):

John F. Kennedy had Addison's disease. If you look at early pictures of JFK, he was very skinny and he actually didn't get a diagnosis until he was 30 where he began treatment. So Addison's disease is really close. Even though they kept his condition, they kind of kept it secret. Addison's disease affects other hormones. Blakelee's conditions just isolated to cortisol, but it's very similar.

(10:21):

And then we have Cushing's, which is also very close, but that's where the body produces too much hormones. So that's when you have things like the hump part of the neck and you'll see the gaining of extra weight and then high blood pressure. They checked for all of that, but when they would run those numbers, it was kind of like, I mean, there's probably much more complex. So all of those out there who can help me, but the average of those, whatever formula they were using, it would be low, but not crazy low. But it was when they started pulling those hormones apart, looking at those numbers over time. All those years, that cortisol was like zero. And we did genetic testing, but that was like 2016.

Mary Baudoin (10:55):

How was that affecting her life and friendships? Does the family understand what's going on?

Latasha Holt (11:01):

We did some early family therapy for sure. I don't know if you've been around anybody who has blood sugar issues that the mood can change. So we had to explain it to her sisters, but it really did affect her, like her schoolwork and we had to really work and we still continue to do that to work with. She has a 504 plan in place so that we can make sure if she's not able to go to school. COVID was really scary for us. Search on what was happening really with anybody, especially those children who have or those people who have that.

(11:25):

Basically, with these two separate issues working against each other, anytime that she would have a seizure, we also had to go into this treatment plan that we had. So she takes a daily pill that kind of mimics the body's flow. So you wake up in the morning and you're burst of energy and then midday she gets another one and then at bedtime. So she takes this by mouth. So if she's ever not to be able to take it by mouth, danger, danger, because she has to have it be in an IV or by mouth. So if she used to get sick or throw up to have some kind of issue with that.

(11:54):

But if she's to break a bone or if she's to have a seizure, which is something we deal with, we have an injection that we have to give, which I have now. And I think of all the years we didn't have that. She was in an adrenal crisis. So what happens, my dream one day is for the research to really improve around this. There's not a lot of people who have it. Pfizer, if you hear me, how well of you guys. It's not an EpiPen and it's not an EpiPen that you use. It's actually a vial.

(12:21):

So you have the powder and then the liquid part and it has a plunger in the middle and collapse it and you shake it. And then, of course, if she's having a seizure, you're trying to protect her from that. After you constitute the medication, then you have one needle that's going to be needed to draw it out of the vial. I'm not a trained medical. I'm learning. We practice on oranges and avocados and we do all the things, but then it has to be injected into her thigh.

(12:45):

So if you don't use the right size needle, it can break, bend, all of the things. Also, important to note that if she goes to school, she needs to have that medicine with her. You just have minutes. So really advocating it's not an EpiPen, it's not something that you can just like injectable.

Mary Baudoin (13:01):

It needs to be taken with precaution. It's not just, like you said, like an EpiPen or something that you just kind of use on a regular basis.

Latasha Holt (13:09):

That people are more familiar with, for sure. And I've asked, and I think the medicine has to stay. It doesn't stay good long mixed, so it has to mix on time when you need it. And I've really learned a lot about that. Gives me nightmares. I really struggle. I worry. I do a lot of advocacy work with Danny's Dose.

(13:25):

Danny's Dose really was established. A dear friend of mine who I met because I didn't know what to do. I didn't have connections and someone put me in contact with Darlene Shelton. She's a grandmother out of Missouri and her grandchildren have hemophilia. That's the clotting disorder. What we found out is when you call 911, and this is true when they show up, different states have different rules and regulations about helping. So if they don't carry the medication, trach, Solu-Cortef, which is very rare, the right kind of clotting factor, they may not administer the medicine.

(13:58):

We were to be in a car accident. I was unconscious, right? We want to keep her medicine attached to the seatbelt with her so it doesn't fly away. We've worked on developing Danny's Dose headrest with our EMTs to make sure we go to EMS conferences, talk about these rare conditions because they absolutely want to help too. So rare. And sometimes there's that lack of training.

(14:18):

Where we live in Acadiana and we're super special because Acadiana ambulance stretches a lot of state, which has a lot of different rules. Big piece of working for Danny's Dose is continuing to advocate because we lose a lot of people. Things where they don't know, even though we carried patient carried meds and we have our own medications with us, if they're totally unfamiliar with it, they might not even recognize what it is, even though we have the medical ID on.

Mary Baudoin (14:39):

I was going to say, because I attended the disaster preparedness workshop this past weekend for people with disabilities. And one of the things that a set of parents had for their children who are nonverbal, like my daughter, this could apply to any family. It was like a QR code that they created. And if someone on a medical or police force were to scan it, then their name pops up. You can actually do it like in a Google form so that put their picture in the middle of the QR code. For Lexi, it would come up, Alexis Barbry, her diagnosis and anything, like any medications that she's on. I think about that as a parent, like being in an accident and then what if I'm unconscious?

Latasha Holt (15:17):

Absolutely.

Mary Baudoin (15:18):

They don't know what her baseline is. So if we get in an accident and they're like, "Well, she's not talking." Well, she doesn't talk normally anyway. So she doesn't walk to do this QR code. I was like, "Wow, that's a good idea." And it could be something that, whether it's a necklace or a little bracelet or something I put on her chair or seatbelt strap or something like that, that's a good idea.

Latasha Holt (15:37):

Absolutely. So we actually use our medical ID is from my ID and it's a slider. So it'll slide on the Apple Watch. We use that. So I totally agree with you. Part of advocating with your EMT though is like building relationships with them, letting them know where you live and the case is so that they're familiar with that residence, making sure that there's awareness because they truly want to help. But I've called all of a sudden the firemen are in your house and you hand them medicine and they're like, "What is this?" Definitely worry about that.

(16:06):

There are a few programs that look at when you travel across state lines because that's always difficult for us, making sure we have access to a hospital. But also you don't track people like that, but it would be really nice to know if you get 911 call and it's this person, these are the things that they need.

Mary Baudoin (16:20):

You talked about daily life and management. I was going to ask you, I know about her adrenal insufficiency medicine. What about epilepsy? Does she take medicine there on a regular basis? I'm presuming so.

Latasha Holt (16:31):

We do. And currently, we've had a really tough spring this past spring, so we have been on a lot of medicine and finding the right medicine. Trigger alert, doctors want to see what kind of seizure it is. And it's so hard for me to even think about with the dual situations we have going on to stop and film. There's a lot of power in filming those seizures so that we can know more about what kind they are and how to treat them.

(16:52):

So I've tried to join pages and it kind of makes me panic. It definitely a trigger, someone having a crisis like that. So this whole spring, we have been trying to find the right medication and then we were actually realized we were on the wrong medication. So getting off that medication's not even a whole process.

Mary Baudoin (17:07):

No. It's a whole weaning process.

Latasha Holt (17:09):

It's a whole weaning process or you could have so many other side effects. And a lot of medicines are used for other mental health, mental health type things. So we have that piece that's happening, that feeling of confusion. We definitely try and keep her stress level low, keep her hydrated, eat snacks, make sure that we're doing all of the things so that we don't lower that seizure threshold.

Mary Baudoin (17:27):

Now, you said she's 15. Neurologically, she functions as a regular 15-year-old?

Latasha Holt (17:32):

She's very 15. She's very bright, doing well. She's always done well in school. Developmentally, she's done awesome. She's super bright. She has such a bright future ahead.

Mary Baudoin (17:40):

Can you talk about medication routines, emergency preparedness, monitoring her health? What does that look like on a daily basis?

Latasha Holt (17:48):

So the number one thing that you'll hear is, "Blakelee, are you okay? Blakelee, are you okay?" Probably gets really tired of me asking that. And I know it probably makes her crazy, but definitely trying to find that balance. So we keep calendars. I'm very visual, even though there's so much technology. So anytime we are working with a different medicine, we have our calendars. We had to have a system because if she's having a seizure and I've said, "Hey, did you take your medicine?" And I didn't see it. We wanted to have a system.

(18:12):

So she has a little isolated day that has her three times that she takes her medicine. And then when she takes it, she puts it back in and we have a little drop box. If she's having an episode, I can grab it. One time it was stuck in the cool pocket of Taylor Swift hoodie, and then you look crazy trying to understand exactly what's going on.

(18:29):

You mentioned a Google Doc. We did that. We keep a Google Doc of all of the most current information because when she's having an episode and we keep binders, but having a Google Form where we can keep all of the information so that when we get to the hospital, it's readily available.

Mary Baudoin (18:43):

Doing a Google Doc is probably a good way to go.

Latasha Holt (18:45):

Of course, you don't want to put anything that you wouldn't want to put. Like for us, the name of her pediatrician. All of that information is there. We also have an injection bag and so we really want to work with Kate Spade or someone because there's not a really cool way to store medicine. Her sister-

Mary Baudoin (18:59):

Oh, hey, I'm all about being a fashionista and getting some cool stuff out there, so yeah, that would be-

Latasha Holt (19:04):

Her sister sews and she's made her some really awesome stuff lately. Making sure that we have a place her injection can't get too hot or too cold, a place that any little kid who's around, but we keep it zipped up in all of the emergency orders. Basically, we definitely have that.

(19:19):

And then so if we get up in the morning and she takes her medication and it takes a little bit to kick in. So she's up about five and she's taking her medicine and we've correlated her cortisol with her epilepsy medicine. So it's one time instead of waking up 22 times to take. We've aligned it pretty well. And then for that part, she's pretty normal throughout the day.

(19:36):

Water is dangerous with folks who have seizures, right? So we are careful around bath time, swimming, things like that when you have a seizure disorder. But basically, we make sure that she's trying to be more aware of her own body. So how are you feeling? Seizures are so strange.

Mary Baudoin (19:50):

And there's things, a lot of us in the disability world, we kind of know what those triggers could be like flashing lights, strobe lights, a loud noise that can certainly trigger a seizure, but it's the days, and Lexi, 9 times out of 10 will just have one out of the blue.

Latasha Holt (20:05):

So scary.

Mary Baudoin (20:05):

There's just no rhyme or reason for it. It just, it happens. Thankfully for her, it's not too long. Once in a blue moon, she'll have cluster seizures, but that's pretty rare. We do have the Diastat gel to give to her in case we need to triage. For the most part, we don't have to use it.

Latasha Holt (20:26):

The nasal version, we've had that one as well. So it's a little bit easier. We have not had to use it either. Thankful the seizures have been very short. So basically, when she's not in school, we're pretty normal, but we do try ... We keep a wheelchair in case she doesn't have a lot of energy. We go through TSA pre-check if we fly. We just conserve our energy for her. And we keep snacks. We definitely keep those things. But school is a little bit different.

(20:50):

So when we're at school, we have to really front load work with the nurses, make sure we have health plans in place, that she has teachers who are medicine trained because she can self-carry her meds, but it doesn't mean she can self-inject. And we need people who understand. My dream, I would love to have a seizure dog. There's not a plan for adrenal insufficiency, but it's probably really close. But I think that would give her more independence, be helpful, but that's to come.

Mary Baudoin (21:15):

I thought about getting one for Lexi, but she doesn't have seizures as frequently as she did when she was a little younger. She's 28 years old now, but thought about that. Dogs have a higher sense of touch like they do with smell and sound and sight, all animals do. Is there a message or a call to action for our listeners? And how can families support such rare diagnosis like what your daughter has?

Latasha Holt (21:40):

I think the biggest call to action is to get involved, to tell your story and to listen to others. I know that sounds so basic. We're all different, but we're really all close to being the same. So I think when I went through it with Blakelee, I wanted no other family to spend seven years. And the average is like seven years, a rare condition. I think AI simulations will help.

(22:03):

Actually, I do. So we can train so doctors can see more of these rare conditions, but definitely advocate. Advocate for education. A big piece is such community driven, like join the school board, the city council, all of those things to make sure that if you don't have a rare disease that you understand the community, those in the community, make sure that the people around you are being cared for. But also volunteering for folk families and helping. It's very hard to find when she was really little, someone who can stay.

Mary Baudoin (22:31):

Oh, yeah.

Latasha Holt (22:31):

Well, her sisters are around and we keep good communication and contact, but ultimately someone needs to be with her right now. All the time, keeping a set of eyes on her. There are times when there's a couple of minutes that it's overlap, but it scares me a lot. But we also do a lot with social media. This podcast is amazing. Thank you so much for the work that you put it.

Mary Baudoin (22:49):

You're welcome. Thank you.

Latasha Holt (22:50):

But what I'm finding is no matter what job you're in, whether it's business or a teacher or construction, all of those tie to our rare disease community with exceptionalities. So even for making buildings accessible, a ramp at the house to get the wheelchair down, I think it's really important for whatever function that your job is that you think, "Okay, how can I help?" We just spent time in DC advocating. I was up there working with Patients Rising and also advocating for the EveryLife Foundation, but really trying to get in front of Congress and saying, "Hey, this is what our day-to-day is like. These are the things, because they have big jobs with lots of different responsibilities." So just speaking and listening and advocating, because as you know, when your child gets older, Blakelee will be independent and she's going to do great. But making sure that she's set up. I worry as a mom, what if something happens?

Mary Baudoin (23:39):

I think a lot of parents do.

Latasha Holt (23:39):

So I think just like her sisters are phenomenal. We have a great support system that checks in and they have a different point of view. So sometimes, sisters can say things. They all work together. Basically, the call to action is definitely get involved. When I was in DC, I was able to advocate.

(23:52):

A lot of the challenges that currently right now is trying to figure out a lot of the concerns rather is how do we decide who gets this? We have these many apples. I taught elementary. How do we divide these up and among who? I just think that oftentimes, we see people who do misuse resources. And so hard when we see families like ours who there's not a certain box to check for us.

(24:15):

So how do we say, "Hey, this is what we're going through at school." Home bound is so important because she has a right to have an education, has a right to learn. All kids do, all families do. So how are we going to be able to support her in that avenue? So making sure that we have those resources. I don't think that our most vulnerable populations are the ones that we necessarily want to be cutting short.

(24:36):

When I was in DC, I don't have a political science degree, but I did ask some questions like, "Okay, a lot of the healthcare that we see falls in that bucket, energy and commerce." And I was like, "Okay, so why is it in energy and commerce?" It's our system set up to really support in the way that people need to be supported. Now, our school is able to be supported. Going on, this is me in my classroom and it's the stairs and these kids are trying to get into school and the helper is shoveling the snow on the stairs because all the kids, except for one, would go up the stairs. So more kids would get in faster.

(25:05):

However, to flip that and just shovel the ramp, everybody could go in at the same time. Where we're looking at Walmart, we don't necessarily pull the handle. We all just go through the door that automatically opens. So how can we be more creative in thinking about ways that we can do what we're doing but serve more than just your average kid or persons?

Mary Baudoin (25:23):

What advice would you give to listeners who been recently diagnosed with adrenal insufficiency and/or epilepsy? And how do you think that they could stay proactive?

Latasha Holt (25:34):

Number one thing I think is to find your people, find your support group. Figure out ways that you can stay connected. And social media, although we're getting old, right? Facebook's old for old people. There is a lot of ways that you can work with other people to stay connected. And I think that it's important for us to make sure that you have a system.

(25:53):

What works for your family may not work for mine and share those resources. There's times when I'll say, "Hey, this medicine, did anybody heard this? Did you see this? What's happening in your state with this?" Finding people, because it's so important having you as a friend. Having people who have things that they deal with, open enough being vulnerable, because it's things like I bought a new house. I was very thankful for that and I had pulled my car up a little too far, emergency and I couldn't get the wheelchair. And it was the things like that. And I'm like, "Oh." And I'm so devastated as a parent. And so just hearing, "We were fine." And in my mind, I'm like, "How can I find support, find ways that other people are coping and managing?"

(26:27):

And also just advocating for the schools. I'm a teacher. Our schools are so vitally important to all of us, but those who have exceptionalities and those who are living with those who have exceptionalities. So I think making sure not to forget to support our schools, support initiatives. And sometimes it's so innocent. Diabetes, you give candy, but not everybody can have candy. Or when the worst of all that drives me crazy are attendance awards. There are days that likely can't go. And she's the odd person that may have lost something silly, but that almost double whammies that person who's going through that. Same way.

(27:01):

So I think it's really key that in our school systems that we set up little baby democracies that launch the world that we're living in and that we make sure that we're being aware of all that. But finding your people, but being good to yourself. And you always encourage me. It is something that I find so much joy in talking and volunteering and supporting. That's what keeps me going because we could all sit around.

(27:22):

And I know you know and just feel terrible for ourselves. We have some good reasons. However, this podcast, things that you do, it's called The Ability Podcast. Flipping that narrative and really helping us to be kinder to one another and like understanding, those are the things I think that's going to bring us the most joy. So making sure that we love on each other, but we find our people because just yesterday I had an issue with a prescription and I was like, "What is going on?"

(27:44):

The pharmacy is my best friend and my worst enemy. If I ever had to fill medicine. Trying to get orders for school and I've papers everywhere and it's got to match the bottle and it's all of these things that I'm going through. And so I'm asking friends, "Hey, what's happening over there? Is there a generic for this? Why are they not approving that?" And those times really helped me realize I'm not quite as crazy as I thought I was.

Mary Baudoin (28:03):

No, you're definitely not crazy. And I find that even if it's virtual support, it's a good thing. Lexi has a rare condition. It's called lissencephaly. So her brain is smooth. Her brain stem is formed, but the rest of her brain is not. So her brain has packaged IRA. So that's like the ridges and the folds in her brain. And it is a rare condition, not as rare as Blakelee's, but I was able to find on Facebook years ago a lissencephaly support group. And I think now it's grown to 7,000. At the time, there was about 2,000 members and it's global. I mean, I talked to mom from Sweden. Most likely, you can find whatever that diagnosis is that your child has, you can find a group on Facebook for it. I like to join as many as I can.

Latasha Holt (28:47):

Same. Join them all.

Mary Baudoin (28:48):

Yeah.

Latasha Holt (28:49):

You can always leave them.

Mary Baudoin (28:49):

Yes. You can always leave them. Someone might post something and it's like, "Yes, I can relate to that. Had that same issue." Or, "No, I can't relate to that, but thanks for the heads-up."

Latasha Holt (28:58):

Absolutely.

Mary Baudoin (28:59):

It's a good tool. There's other moms that the child has cerebral palsy or autism or Down syndrome and there's a common thread. We're all moms and it's a different way of life. And they understand if they come to my house and the flower beds have a lot of weeds in them.

Latasha Holt (29:14):

It's perfectly fine? Who needs those?

Mary Baudoin (29:16):

Yeah.

Latasha Holt (29:16):

I think it's so important. And even I was in some of those, I mentioned her low blood sugar and I was in a lot of hypoglycemia groups. When I see someone who's like her blood sugar, I'll say, "Oh my gosh, check their cortisol, check for this, check for that ways, use this resource."

(29:29):

Being in the hospital, there's so many caseworkers here. So many people call, they've connected you. So many here in Acadiana who's in, who help and who have helped us with getting paperwork done or knowing the process, they'll call me two or three times, say, "Hey, what you need? What do you got going?" So absolutely, I agree. Join and just having a voice. Don't be afraid to share.

Mary Baudoin (29:47):

Are there any organizations here locally that you've been involved with?

Latasha Holt (29:51):

A lot of national organizations are also on the smaller scale. Epilepsy is huge, right? It's a lot with epilepsy. There's lots of events, but currently I've been working with the RDAC, which is the Rare Disease Advocacy Council.

Mary Baudoin (30:02):

Nice.

Latasha Holt (30:02):

A lot of the states have those. It's kind of a subset of NORD. We had our first day at our capital here in Baton Rouge where we all got together. It was wonderful. I just got to be a part of it, but we all come together and looked at rare diseases and advocacy. We have a beautiful capital, lit that up all together.

(30:18):

We had booths from hospitals, but we also had recruiting for special education teachers. We had kinds of resources that came together to really celebrate, but also to build those communities. And then on a national scale, there's things like scientific symposium that we went to for NORD. But I think just looking at your local level, things that you can do, especially here in Acadiana, the dyslexia groups have runs and support, different kinds of things that they do so that you can find your way. But most of all, think about things that are missing and how can we add to that? What is my specialty that can help with that? Working with students at school or however. The RDAC is something that's really important to me that I've been working on lately. Make-A-Wish is cool too. They do lots of other things, but we have rent subsets of Make-A-Wish.

Mary Baudoin (30:58):

Let's say someone wants to get involved with Make-A-Wish, whether it's to nominate someone, to get a wish or to volunteer, how do they do that?

Latasha Holt (31:05):

We have so many kids waiting on wishes, so we need volunteers. So currently right now, we have Make-A-Wish. It's actually, we're in the Gulf South, so it's out of Houston. I got to go to Stuller, to one of the breaks where everybody come together and we work to celebrate and raise money for Make-A-Wish.

(31:21):

Every year in our Mardi Gras parades, there's a Wish kid. So definitely look into Gulf South or whatever area of the country that you're in and just kind of volunteer. So it's so simple as you just help walk kids through the airport or you go interview children and ask what their wishes. So much is needed.

(31:36):

And even like with Hospice of Acadiana, I've done some work with them, the No One Dies Alone program. It's not even necessarily related to rare disease, but you find amazing people. We are so blessed in Acadiana. We have so many people just treat you like family and that want to help. So even though it's different, but just volunteering there, passing out shirts, T-shirts, medals, whatever you can do. I think because you build those connections and you find that support, everybody has a story.

(31:59):

So Make-A-Wish is awesome. Again, I mentioned Danny's Dose. We're always looking for ways to partner up and take our EMTs some donuts, celebrate them too, because they're very important. You never until you're going to need them how important they really are. Check out their websites. We also have Facebook pages and on LinkedIn. Also, your local hospitals will tell you ways to get involved with child life. So many opportunities. So I think just doing a little hunt for some of those. NORD, just how you can get involved and then looking into ways. It may just take your time. It may not take a lot of money if you don't have a lot of money to give.

Mary Baudoin (32:27):

So we're wrapping up the end of this interview, which was very informative and I don't really want this interview to end. I wish we could just talk forever.

Latasha Holt (32:35):

I think for us, we are super excited that we have such good medical care available to us. It's a big piece. We've been really looking at seeing the glass half full. So really pouring into the fact that we can manage this. It's tough, but we could manage it and that there's a plan. So I think we're really mostly excited about having a plan and finding out what role, what that looks like.

(32:59):

I worried about Blakelee being able to drive. I don't think she really wants to drive anyways. A lot of kids don't want to drive right now, actually. No, a lot of kids don't really want to drive. So making sure that things that want to do, what does that normal life look like? How can we support even ... I work on a college campus. So how can we support on a college campus?

(33:17):

So I think faith is a huge big piece, but also realizing that we can manage it, that we can do that, that there's a way. If you don't like your medicine container, let's 3D print one. You don't like that bag, let's get someone to sew you a different way. Advocating at school, telling our story, making sure that Blakelee will stand up for others. That brings us hope, that brings us joy. Also doing things like this, finding ways that we can share our story. Anyways, I have a chapter and a book coming out this fall, ways that we can just make silly videos or share our story that gets lots of views actually.

Mary Baudoin (33:46):

Yeah. You recently did a video. For those listening, I'll share it on our Facebook page, but she talks about all the forms that are required for medication and emergency preparedness and just every single ... Documenting almost every single thing that your child could do, you have to put it in writing and it's a lot. And then the doctor has to fill it out.

Latasha Holt (34:06):

Piles of paperwork and navigating it. It's got to all match it. It's got to all align. And so finding out ways that we can support each other and laugh about it. Really a big part of my newest foundation enlightenment, I guess, is grace. Do great things, but I'm going to make mistakes. I'll lose my cool every once in a while. And I'm giving myself some grace because, like you said, I definitely need vacation, but I definitely think just giving yourself some grace and making sure that you're being good to yourself, whether that be walking or I need to walk more.

Mary Baudoin (34:35):

Oh, yeah.

Latasha Holt (34:36):

Whatever it is, then fix everything. But being good to yourself is very important.

Mary Baudoin (34:40):

Just a few moments of the day or of the week or whatever it is, a good nap.

Latasha Holt (34:45):

And letting people know that you need that.

Mary Baudoin (34:47):

One thing we didn't touch on, and I'll just kind of quickly ask you, because you have mentioned it throughout the interview, is the importance of faith in your life. Tell me about that.

Latasha Holt (34:56):

Oh, gosh. So faith is so important because I'm very smart. I say that. I'm very smart. I have a few degrees. But there is a time when I don't think our brain can understand, think faith comes in. So I love science and all of that, but there is a place where you have to realize that maybe you have to lean on God, higher power. And if you didn't get quiet enough and still enough and listen, you'll find him in the most unique ways. Something will happen very special.

(35:22):

I think that of all the things I thought I would do in my life, not necessarily did I think being this kind of an advocate, getting to meet people like you, getting to work with people in our community, those pieces I think have been a way for something that's really difficult. Everybody has something different to turn it into a way that people go, "Oh my gosh, that really helped me." So I think that's where all things work together.

(35:43):

And also, just taking a moment and being very thankful for the fact that as tough as times are, I'm so thankful for medicine. I'm so thankful for New Orleans and those amazing doctors that wherever you are in the world, like really seeing the blessings and the small pieces because everybody's dealing with something. So I think looking for God in those places and those moments because it really is about faith.

(36:02):

Okay. So I was stuck on the bridge, the Basin Bridge in an ambulance the other day and I was like, "I'm going to ... This was it." It was such a terrible moment and I can remember just putting my head down and thinking, "This is where I could lose it. I could absolutely lose I."

Mary Baudoin (36:17):

And for those listening, if you're not familiar with the Basin Bridge, it's the bridge. It's a 20-mile bridge that goes from Baton Rouge to Lafayette. And it's part of the interstate system of I-10.

Latasha Holt (36:27):

That Basin Bridge and thank God for air flights. But in that moment, and I thought I could lose it. Those lights come on and the sirens came on and we started just doing what she said, navigating through traffic. And it started to get easier. And I was in the back of the ambulance and I looked out the back. The truckers were making a way. And they were, "Hey, here they come. Here, we weaved through." and I was like, "Thank you. Thanks." Even though I was in the back of this really bad situation.

Mary Baudoin (36:52):

About to lose your cool. Yeah.

Latasha Holt (36:53):

About to lose my cool. But looking at those moments and realizing that we have some really great people and that God really blesses us with people who come in our lives. The Basin Bridge is a struggle.

Mary Baudoin (37:01):

He cleared that path for you.

Latasha Holt (37:03):

There was a path. It was very scary. And again, there's only so much you can do in an ambulance, but finding God in those little moments is really important.

Mary Baudoin (37:09):

Is there anything you'd like to leave with our audience today? Anything that we did not touch on, or anything you just want to reiterate?

Latasha Holt (37:15):

I think I just want to reiterate how thankful we are for you in this that you do. I know that it is looking around in awe of all the things that you have worked on to make this so great.

Mary Baudoin (37:23):

Thank you.

Latasha Holt (37:24):

So I think the outlet of sharing, however that is, whatever you can do to share and kind of follow your lead on some things, it's been very inspirational, because we have to learn how to take care of each other.

Mary Baudoin (37:35):

Absolutely. And I encourage people to ... Starting the podcast, I've had other people say, "Oh, I've thought about doing a podcast, but I just don't have time." Make time. I encourage people. I don't look at it as a competition. The more special needs podcasts that are out there, the better. There are some that are out there now, but when I first started, I started years ago just kind of researching. There weren't that many. And especially if there's someone that has a rare disease like lissencephaly, they might not have a lot of resources. So talking about those, it's a great way for people to exchange information and to learn from each other.

Latasha Holt (38:08):

Absolutely. And we're thankful for you for that. So thanks for having me.

Mary Baudoin (38:11):

Thank you. All right, everybody, this is going to close out our episode of This Ability Podcast. Latasha, thank you again for being here.

Latasha Holt (38:17):

Thanks for having me.

Mary Baudoin (38:18):

Sure.