Brown Family -- AJ's Journey with LCC

In this episode of the LCC Circle Podcast, host Holly Tinker sits down with Danielle Brown from Rhode Island, whose four-year-old son AJ was diagnosed with Labrune Syndrome (LCC) in May 2025 after a two-year journey. Danielle opens up about AJ's earliest seizures, the long road to diagnosis, and how her family has navigated life with a rare genetic condition. From finding strength in the LCC Foundation community and the brotherhood of the fire service, to making every doctor visit a family adventure — Danielle's story is one of resilience, love, and never giving up. 

Transcript

SPEAKER_00 0:00

Hi everyone. Welcome back to the LCC podcast, where we explore the story, success, and signs of LCC, which is a condition that affects the white matter in the brain. I'm Holly Tinker, and we are joined today with Danielle Brown, whose son AJ has LCC, and Ashley Dyke, who is the founder and president of the LCC Foundation. In this episode, Danielle will be sharing her son's journey with LCC and how they have found moments of hope and resilience through their experience. Hi, Danielle. Thanks for joining us. Hi. Would you like to introduce yourself to everyone who's listening?

SPEAKER_01 0:32

So my name is Danielle, and we live in Rhode Island, the smallest state. And I live with my husband, Josh, and we have two boys, Owen and AJ. Owen is seven and AJ is four, and he's turning five in February.

SPEAKER_00 0:48

Nice. I love that. How's Rhode Island? Is that anything special about it?

SPEAKER_01 0:53

We have a lot of water. I think like you could drive 40 minutes and be by the ocean, which is really cool. And to just drive through Rhode Island within an hour, and you're in another state. Yeah.

SPEAKER_00 1:05

Wow, that is really nice being by the ocean.

SPEAKER_01 1:08

Very small. Everything is right there. You don't have to travel far, which is that's pretty cool.

SPEAKER_00 1:12

Oh, that's awesome. So I guess we'll get right into the questions. How old was AJ when he was diagnosed with LCC?

SPEAKER_01 1:21

So AJ was just diagnosed in May with LCC, so four years old. But we have known about LCC since he was two. So it was a process to get him diagnosed with LCC.

SPEAKER_00 1:37

Okay, for sure. And so were there any symptoms what got you from two to age four?

SPEAKER_01 1:43

Yeah, I would say symptoms started when he was two months old. So he had his first seizure at two months old. And at that point, we didn't know that it was LCC, we just thought he had epilepsy. And then he had a breakthrough seizure at two, and then that's what led us to another MRI. And that MRI showed calcification synthesis on his brain. And that's when we first heard the words LeBrun syndrome. And then it took us about a year and a half to get his diagnosis.

SPEAKER_00 2:17

Okay. Yeah. So it was a long kind of diagnosis journey. A long process. For sure. Yeah, for sure. Yeah. What uh what was it like for you as a parent when you first I guess we'll start with when he first started having seizures?

SPEAKER_01 2:32

Yeah, it was very hard because he was so small and he we didn't know what was going on, and he didn't know what was going on. And I think when we got his seizures under control, that's when we had hope that maybe this is just like a fluke thing, that he's just a pre me and he's just having seizures and maybe he'll grow out of it. But that didn't happen. Yeah, so yeah, that didn't happen, and we just kept him on medication and kept him under control.

SPEAKER_00 3:08

Yeah. And did you find that first diagnosis? I guess in May, did that come as a shock for you that it was LCC or I don't think it was a shock for us when they diagnosed him with it.

SPEAKER_01 3:21

I think we always knew that it was LCC, but just never was put in the right direction to get his diagnosis quicker. It was more of a shock for us when we first heard that it was LCC. So when he was two years old and they found these cis and the doctors didn't know what was going on, they didn't know LCC. That was a shock for us.

SPEAKER_00 3:45

Yeah, for sure. And I can imagine a year and a half of not having answers must have been really tough as well. How did AJ feel or react to the diagnosis?

SPEAKER_01 3:55

Or AJ doesn't know, he doesn't know what he has or what's going on. He just knows that he goes to the doctor and we always make it a fun time. So when we go down to DC, like we went down to DC to see Dr. Frazier for the first time, our whole family went. So it's just we try to make it fun and a party for him and and just have a good time. We don't want to make it just about doctors and going to the doctor and getting poked and MRIs and all those things. So we try to make it fun for him.

SPEAKER_00 4:31

Yeah, I love that. And guys, do you guys like visit a fun? Like, how do you make it fun exactly?

SPEAKER_01 4:37

Yeah, so like I said, when we went down to DC for the first time, our whole family went. So it was in the pool at the hotel, visiting the zoo, all the museums, and just being all together. He loves that. He just loves having fun and being with his family, and that's all I want out of this. I don't want him, I don't ever want him to know that he has LCC.

SPEAKER_00 5:01

Yeah, that's understandable. Yeah, yeah. And I think it's great that you're yeah, just like making it a fun trip and like ensure he looks forward to it even. Yeah, oh yeah, absolutely.

SPEAKER_01 5:13

Like we're staying at the hotel. He loves that.

SPEAKER_00 5:17

I love that. So I know that sometimes naming something can help with like often how people navigate certain situations because you actually know what it is. Was there a part of you or like just a relief of like knowing what it was finally?

SPEAKER_01 5:33

Absolutely. Having a name to his diagnosis was the biggest relief ever because we went so long with does he have it? Does he not have it? Well, what does he have? If he doesn't have, is it worse? Like we just didn't know. So having that name and able to close that book and then move forward.

SPEAKER_00 5:56

For sure. Yeah. And that way you can actually meet with the right doctors, like Dr. Fraser, and think about exactly, exactly. Yeah. So yeah, I one of my questions was were you aware of the LCC Foundation when AJ was diagnosed? And I know you said you were aware of LCC when he was two. Were you in touch with Ashley, or did you know about the foundation before he was diagnosed?

SPEAKER_01 6:20

So I we like I said, we had no idea what LCC was before they first told us when he was two. And when they first said those words, I was like, I need to do my own research. If our doctors don't know what it is, I need to do this. I can't just sit here and just be like, it could be that, it could not. So I did my own research. I found the LCC Facebook group. And at the time when I joined, I think there was like 80 people on the group, and then just going through that and then finding the foundation. So I followed the foundation's Facebook page, and I think I was on the group for maybe a couple months, and then Ashley reached out to me, and we've been talking ever since, telling her updates on what's going on. She helped us out tremendously when I was struggling to get his diagnosis. So I would have to say that having that support during that time got us through.

SPEAKER_00 7:23

That's amazing. Yeah. Yeah, I'm sure community is so strong and like so helpful. Yeah. Yeah.

SPEAKER_01 7:29

If I didn't have the her to talk to or looking at what the group is all about and reading their stories, I don't know what I would have done. Yeah. I think I would have been in my own brain, like, what's going on? But yeah, amazing.

SPEAKER_00 7:46

I can imagine having other people with the similar experiences or similar journeys can really help you feel less alone, I'm sure. Oh, yeah, absolutely. I was wondering if there were any other ways that you felt community through these difficult times, other than the foundation or the Facebook group.

SPEAKER_01 8:05

Yeah, I have to say, having his diagnosis, our community has come together amazing. Like I work in the medical field, my husband's a firefighter, and the fire service has been there for us. I can't even explain the brotherhood of the fire service and them being with us and helping us out and letting us know if we need anything. It's been amazing. And our community and our family has better support. It's been really good.

SPEAKER_00 8:36

Yeah. Yeah. Wow. I'm like, yeah, that makes us very happy because I feel like a lot of the time tough times can either create divide or bring you even stronger together. And that'll be a good thing.

SPEAKER_01 8:47

I think that's exactly what happened is that they saw that our son has this rare genetic disorder and they all came together.

SPEAKER_00 8:55

Yeah. Yeah. That's amazing. Do you guys have any pets or any yeah?

SPEAKER_01 9:02

So we have a dog, Charlie, two cats, Nash and Big Mac, and then we have 18 chickens.

SPEAKER_00 9:09

Oh my gosh. That sounds so cool. Yeah. Well, I just wanted to ask do you have names for all the chickens? I have names for some of them. Okay.

SPEAKER_01 9:21

All food names, so soy sauce, chicken nugget in it.

SPEAKER_00 9:26

I love that. Do you find it hard to tell them apart?

SPEAKER_01 9:30

Sometimes there's some of the breeds are mixed, so they look all different. And then I have some that look the same. So there's the three musketeers because they all look the same.

SPEAKER_00 9:41

Yes, that is so fun. I was wondering if your dogs are you had you said you had one dog and two cats? Yes. Yeah. Okay. Do you find that they help? Because I know talking to Ashley, she was saying that their cats help them help their son. And do you find the same thing? Like it's just a comfort.

SPEAKER_01 10:01

I would say comfort and then also distraction. So they love to find the cats. Where are the cats in the house? What are they doing? I think a distraction from what's going on. And yeah, you gotta let Charlie out. So let's bring her outside.

SPEAKER_00 10:16

Yeah. Yeah. Yeah. I am and I can imagine the walks getting outside and having those yeah, little nice. Yeah, I was wondering if you could speak on some of the challenges that AJ faces on a day-to-day basis with this condition.

SPEAKER_01 10:32

Yeah. So, like I said, AJ has had seizures his whole life. So that's one of them having him take medication daily for that. He also has his left ankle bends in. So we just got him a brace for that. So we're waiting for that to come in. So that makes him very clumsy. So he falls a lot, he trips on his feet, he doesn't lift them up all the way. So he struggles with that. He's also very small. So he's gonna be five, but he's very small. So he struggles with not being able to do things that his brother can do. Being able to go outside keeping up with his friends because he's so small, he's his little feet can't keep up.

SPEAKER_00 11:18

Yes. Okay, yeah. Yeah, sure. It's yeah, it's tough to see how old is his brother? Seven. Seven. Okay, yeah. Are they really close?

SPEAKER_01 11:31

Oh, yeah, absolutely. Yeah. And another thing AJ struggles with is that he is delayed. So he's speech delayed, so he can't communicate great with other people. So I know what he's saying and what he wants, but when we go out with to see other people, he struggles communicating with them because they don't understand what he's saying. Yeah, yeah, for sure.

SPEAKER_00 11:55

Yeah. I was wondering if there were specific moments in this journey where you you and your husband felt like you were beginning to get a better handle on things, or was it more of a gradual process?

SPEAKER_01 12:07

I think we got a handle on things when we went down to DC and saw Dr. Frazier.

SPEAKER_00 12:13

Yeah, yeah.

SPEAKER_01 12:14

There that was the only time where we felt like we had people behind us, doctors behind us, have an actual plan for him and getting it done.

SPEAKER_00 12:25

Yeah. Having that community and knowing what next steps are.

SPEAKER_01 12:30

Right. We went a long time with let's wait and see. He's four years old, he'll grow out of it. And now we have a plan and things are getting done. That has been the best moment throughout this whole journey.

SPEAKER_00 12:44

That's amazing. Yeah. How often do you guys go to DC?

SPEAKER_01 12:47

Do you have to do tests or so we just went down for the first time and now we'll go down twice a year because he has cis on his brain? He should get MRIs twice a year. So we're going down to DC twice a year now, getting his MRIs done there, and all and then he'll meet, he'll get his MRIs done, and then he'll meet with the clinic team. Yeah.

SPEAKER_00 13:10

Yeah. Yeah, that's really good that you have that kind of secured. You know what to do. And yeah, for sure. I was gonna ask how you find a balance between obviously your jobs and then also taking care of AJ, and then also having time for yourself to just respit.

SPEAKER_01 13:29

I think my husband and I do a really good job of making sure we have us time as a couple and then me time. Yeah. So going out on dates, be with each other, and then going by myself, grocery shopping, no one's bothering me.

SPEAKER_00 13:48

That's really good. Yeah. I feel like that's such a good thing to have is you both recognize that even just doing chores by yourself and like exactly. Exactly.

unknown 13:57

Yeah.

SPEAKER_00 13:59

Yeah. So I'm sure there have been lots of ups and downs, like you were mentioning on this journey. Could you touch on the hopeful and the positive moments that you found so far in this journey?

SPEAKER_01 14:10

Yeah, like I said before, I think the most positive from this journey is seeing Dr. Frieza and her team.

SPEAKER_00 14:17

Yeah.

SPEAKER_01 14:17

Yeah. That they know LCC, they know what they're talking about, and they're just getting it done.

SPEAKER_00 14:24

Yeah, that's amazing. Yeah. And I'm sure also seeing the firefighters stand together for community, that must also be positive. Yeah, like you were saying. Yeah. So we just have a few more questions. So for families who might be in the same position now that are listening, facing an LCC diagnosis, or even not sure, like in AJ's position when he was two, when you weren't sure, or two months. Could you give some advice on like finding strength and resilience through these times?

SPEAKER_01 14:58

Never give up and keep telling your story. Get the word out there. That's what's gonna make your process so much better is to talk to other people who are going through the same thing as you. Tell your story to your community and to never give up.

SPEAKER_00 15:19

I love that. Yeah, that's amazing. Is there anything else you'd like to share that we haven't touched on today?

SPEAKER_01 15:28

I don't think so. I think and I think if anyone else is going through this and have that first finding of LCC, get in touch with the foundation, the LCC Foundation, and get in touch with Dr. Frazier. And I would get down to DC as much as you can because they know what they're doing with LCC instead of bouncing around to different doctors, go down to DC. Yeah. Frazier, get in touch with the LCC Foundation. It's gonna make things so much easier for you.

SPEAKER_00 16:01

Okay, thank you for sharing that. Yeah, I feel like that is such a good starting point that you have to work off of for sure. Yeah. Yeah. Well, thank you so much for chatting today. You're welcome. I really appreciate it. And if people want to reach out to you or yeah, ask you anything, is there any way to go about that?

SPEAKER_01 16:25

Yeah, I have Facebook, so just Danielle Brown. I'm on the LCC Facebook group. And then AJ also has his own Facebook page that I've been, which I'm not very good at. It's my first time doing all this, where they can message me on there too. It's I think it's called AJ's Journey with LCC on Facebook.

SPEAKER_00 16:47

Yeah, we can put it in the description. Yeah. Okay, awesome. Well, thank you so much, and thanks, Ashley, for joining us as well. Yes, thank you so much, Holly. Yeah, of course. And that's all the questions I have. Thank you. No problem. Thank you so much for listening to this episode of the LCC Circle. If you would like to hear more Family Spotlights or other podcasts on the science of LCC or the LCC Foundation, please feel free to check out our other LCC Circle episodes. It would mean so much if you shared them with your friends and family. As LCC is an ultra-rare condition, any awareness of it helps so much. If you are interested in learning more about LCC and the Foundation, you can check them out on Instagram at LeBrune underscore syndrome. That's L-A-B-R-U-N-E underscore syndrome, or on Facebook at the LCC Foundation. The links are provided below in the description as well. Thank you again, and we hope you tune in for future episodes of the LCC Circle Podcast.