Rhandyl: Hey y'all. Welcome back to Raising Disabled. Deonna and I are just gonna catch you guys up on what we've been doing since spring break. Easter happened. So how was y'all's Easter? 

Deonna: It was good. We went to Artesia. I hadn't been around my entire extended family since. My nana died back in July. Oh, wow. And like a little bit here and there. Mm-hmm. Some people, but never, not everybody. Yeah. And so that was cool. I was like, mom, you have to have a party now because I'm coming into town. So we did like Easter egg hunt and all that. And then all my cousins were out there and. I got to see my nephew, so my brother that passed away. Mm-hmm. You know, It's always cool when I get to see yeah. Him and get to spend time with him. 

And then we played a little bit like cousins houses and just Oh yeah. Did all that, like , I mean, I'm from a small town too. It's not as small as Yeah. Here hometown, but pretty little. But yeah, we just chilled and hung out. And then we went back last weekend because, my son was supposed to hunt, but my dad got sick. My dad was supposed to take him. Yeah. And so hunting's really big in my family. Yeah. Too. I don't hunt like you do, but like all my other family members do. 

Rhandyl: What were they hunting? 

Deonna: They were gonna hunt Turkey. Okay. In New Mexico. And so my dad wasn't well enough to take him and he was like sick about it because like my dad lives for that stuff. Yeah. And so he is like, I feel so bad, like I can't take him and I can't take him like I don't know anything. And so yeah, we went back last weekend again so that he could hunt, which he didn't get anything, but but he got to go, it's like you, you sometimes don't, it's That's how hunting, no, that's fire hunting. Yeah. It's like half disappointment. But did they see any turkey? They did and they got to talk to him a little bit, but they just wouldn't come no close. They didn't come in close enough,

but, so we've been at the cabin some and like doing stuff like that, but it was busy fun. Yeah. It was. It was a lot of trips. We have something every weekend until Oh wow. School's out. It's lots of trips and traveling 

how was your Easter? 

Rhandyl: It was good. We stayed home. It was just us. We. Didn't have any family come down and we didn't go home. Yeah. 'cause we had just been there in March and it's, yeah. And with our nursing situation right now, it's just hard to get away because you have like spots open, right? Yeah. So it was, but it was nice. We've done Easter at home the last few years. Mm-hmm. So we just did some of the. Traditional things like Cole had different family Easter traditions than me. Mm-hmm. And so we tried to incorporate both and so like the kids died Easter eggs and then the morning of Easter we hid them in the house, which was. Nice because it was really rainy and chilly that morning. Oh, was it? And so they hunted in the house, and that's

this year Remi hunted in her gate trainer in the house, which was fun. And I had eggs up higher to where she could reach them and put 'em in her basket. Instead of having to like bend down, grab him off the floor. Yeah. We made sure brother. So brother woke up before sister. You're like, don't touch these. And I was like, okay. So all these that are up high the Easter bunny hid these for sisters, right? Right. So she can reach 'em in her while she's walking. And so he was actually really good about it. And then he was so excited for her to hunt her eggs and he held her basket for her. It was the cutest thing. And we went around and that's pretty sweet. She hunted eggs. 

 So then we had our neighbors over. We smoked a ham and that's so good. Made all the yummy sides. And I made doubled eggs and Rice Krispies and just, we just had a like, I love homemade rice Krispies treats. Yeah, those were the best. Yeah, it was just, it was good. We had a mid-afternoon meal and, Remi and Barrett before the other kids got over here. We had hid the plastic candy eggs outside. Oh yeah. Yeah. And same thing like on our front porch, I hid all Remi's eggs up high where she could reach them. And she was in her wheelchair for the outside hunt. And then, barrett hunted in the yard, and so that was fun. And they got all the candy, which Remi could care less about. She really just wanted to play with the eggs, like she just opened and closed 'em and was just playing with eggs for like the last week. And then my son, of course, . I wanted to hunt Easter eggs the entirety of the week, like 20 times. And I was like, it's not special if you do it every day. 

Deonna: Oh my gosh. That's how Allie's was like we hid all of her eggs on the porch mm-hmm. where the wheelchair could go. 'cause they have the big grass yard and everything. Yeah. And sometimes a kid would come up on the porch and she'd be like, those are mine. I love it. Oh my gosh. We get it. And we crushed those eggs on our heads. The yes, yes, yes. Spring. That's what I was the confetti. Eggs conti. Yeah. And it was bad 'cause we did it to everybody. Nobody was safe. Yeah. And so everybody had it all over their hair. Then they all go back inside to my mom's house to eat dessert and stuff like that. And it's fed everywhere. So my mom's chill about stuff like that. , I said, I'm so sorry. She's like, who bought these? And I was like, the Easter Bunny brought them right. And she's like, thanks a lot Easter buddy. It was hilarious. There was confetti like, oh. In every, like ev I was like, you're gonna be thinking of us from Easter Yeah. For months, because it's gonna just pop up everywhere. 

Rhandyl: Yeah. When the neighbor kids came over, I busted out the confetti eggs and I was like, okay. Only outside. And they did the same thing. It was everywhere. It's still everywhere in our yard. Yeah. And then it, of course, it got drug into the house. And yeah. So 

Deonna: just like a fun memory from Yeah, it's fun day, but yeah. Yeah, and we've been playing some baseball. Yeah. Our daughters are both in the Challenger League, which is for kids with disabilities. And so we haven't got to play that many games because. The weather is cra like we have this town where you wonder why you live here. Constantly it's windy or gross, it's just crazy. 

But we have, we did have opening day. You were gone. We did that and so that was fun. Getting to meet all these other parents who. Are in the same boat as us in different ways. And so me and Cole worked that together and so we had fun doing that.

But yeah we've been up to a little bit. School is coming to an end here in a little bit for us, but it's getting busy, , oh yeah. So that's what we've been up to and we're excited about this episode, so we're just gonna jump right into it. Hey y'all, it's Deonna from Raising Disabled, and at our house, my daughter is in her Zing Stander all the time. She loves it. She loves to get in there and play video games or read or play on her computer. Zing Standers are designed to offer more than just support. They pave the way for crucial early intervention therapy.

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You can learn more at zingstanders. com. 

Deonna: Hey y'all, welcome back to Raising Disabled Today. We have Jillian on, we have been following her for quite a while, especially when we were looking into starting our own podcast. We were looking at the other girls who have gone before us, and she's one of those girls. And so she has Confessions of a Rare Disease Mama, and that is her name on Instagram as well.

And so thank you so much, Jillian, for talking to us today. We're so excited to get to learn all about you and your family. 

Jillian: Thank you. Thank you so much for having me. I'm looking forward to it. 

Deonna: Yeah. So first, just , tell us about your family and we'll just kind of get started there. 

Jillian: Yes. I'm Jillian. , I live in Cincinnati, Ohio with my husband Donald, and our two kids Roman and Stella. Roman and Stella are both diagnosed with a rare and terminal genetic condition called ASMD, which stands for acid sphingomyelinase deficiency. It's more commonly known as Niemann pick disease type AB and it is a type of lysosomal storage disorder. So their bodies are essentially lacking an enzyme that's needed to break down a certain type of lipid. 

So what happens is over time that lipid starts to accumulate in cells throughout the body and it causes, eventually it causes cell death, but it also causes issues with certain organs. It primarily affects the liver, spleen, and lungs. And then in the most severe cases, it affects the brain and causes like a rapid neurodegeneration. Which is why it's compared to a baby Alzheimer's a lot. , it's a progressive illness and typically kids with the more severe form they will start regressing around age one to one and a half, and then it's pretty fast and furious. So over the course of one to two years, they basically lose most if not all of their skills. Wow. Wow. 

Rhandyl: How old are your children now? 

Jillian: So Roman is six and Stella turned five in January, which is a huge accomplishment. It's something I literally think about every single day, how blessed we are because at the time of their diagnosis we were told there was no treatments, no cure, and that they wouldn't live past age three, so Oh, wow. Yeah. So the fact that they're six and five now is just something I do not take lightly. I, I don't take mm-hmm. a single second for granted. I bet you don't. 

No. 

Rhandyl: Okay, Jillian, so tell us about the time leading up to finding out about this diagnosis 

Jillian: Me and my husband got pregnant after about a year of trying with my son. And the pregnancy itself was pretty typical. Nothing crazy happened. I had him and he was perfect. He was healthy. Just we were, in that like first time parenting, little blissful bubble and then we did start noticing certain things like the night we brought him home from the hospital. He projectile vomited. And then he continued to throw up a lot and we brought it up to our pediatrician at the time and she was basically like, a lot of babies have reflux. That's not anything too crazy. So she talked us off the ledge a little bit, 

but I think deep down we like, felt like we knew this wasn't normal. Spit up, like this was like projectile. Yeah. And it was happening all the time. So that's weird. Um, We filed that away in the back of our minds, dealt with it the best we could. And then he started around six months of age. He was. Not meeting certain milestones. Again, brought it up with the pediatrician. She's like, boys sometimes lag behind girls and that kind of stuff. And he was a little smaller, he wasn't gaining weight. He wasn't on the growth curve. Yeah. 

So at his six month visit, she was doing a physical exam on him and she was like, you know, I might be crazy, but it feels like his liver is a little enlarged like I am. And I think that combined with our concerns about the vomiting and all that, yeah. She's like, let me send you guys to go get some testing done. So we went the next day to Children's Hospital. We had an ultrasound done of his abdomen and like blood work and we did that in the morning. 

Maybe two or three hours later, I get a call from our pediatrician and I was like, this can't be good. Like, why is she calling me this soon after we did this? So I just knew I don't, my heart sank because I was like, I don't like where this is going. And I could just tell by the tone of her voice she's his liver and spleen are enlarged. His labs came back abnormal. You guys need to go down to the hospital today. I scheduled an appointment for you with a GI doctor. It's at 3:00 PM So of course, like I'm, my mind is just going in a million different places at this point. 

Rhandyl: Yeah. Not to mention you're a new mom with a newborn, you're already hormonal and yes. That always makes things better overtired and for sure.

Jillian: Yes. That was another added layer. Anyways, we took him to the hospital. One test led to another test, which led to genetic testing, and we eventually got his diagnosis at about eight months old. And we found out just a few days before getting his diagnosis that we were expecting our daughter.

Oh wow. Whoa. Yes, that was definitely the craziest week or two of my life because yeah, you go from just like the joy and this her pregnancy was totally unexpected. Finding out that you're pregnant and expanding your family to your son getting a terminal diagnosis. And then on top of that. We found out that it was a genetic condition. So our That's what I was gonna ask. Yeah. 

Yeah. So any of our offspring have it's an autosomal recessive condition, which means both of us are carriers for it, right? So any of our offspring will have a 25% chance of actually being diagnosed with this. Whoa. They have a 25% chance of being totally unaffected and then a 50% chance of being a carrier. Oh man. I think like through her pregnancy. Like obviously we were going through a lot. Yeah. 

Deonna: And I don't, oh, it'd be so like depressing. It'd be like, what's about to happen again? Oh my goodness.

Yeah. 

Jillian: Yeah. And there was just so many unknowns. , but we go to Cincinnati Children's. That's where my kids get all their care. And yeah. Just to give you guys some perspective, when we first saw a geneticist there after my son was diagnosed, they basically told us we haven't seen a case of this in 20 years, and this is the number one children's hospital at the time. Wow. Wow. That's scary. It was very scary. And they didn't really have any answers for us after that. They gave us the diagnosis and they said there's a specialist in New York. And we're like, cool, we're gonna bring him there because we need more to go off of. Like we can't, yeah. We need to know what the next steps are. 

So we ended up bringing him to see this specialist in New York. And that was a little disappointing too, because with this condition and a lot of rare diseases, there's like a spectrum of severity yeah. There was a type B, which was the more mild end, where, kids can live somewhat normal, quote unquote, normal healthy lives. And then there was a type A, which is the more severe end, which is terminal, and most kids pass away by age three. So we didn't know where on the spectrum our kids were gonna fall because there was such limited data at the time that they didn't have. They recognize, I think it was my mutation that they recognized in a type B patient, but my husband's mutation they had never seen before. So we left that appointment without solid answers of and 

Rhandyl: there's no further testing that could be done other than, you have, you husband has this, you have this combined and then now your son definitely has both. But to be able to figure out the type, there was really no extra testing. , in the beginning did they tell you it was just a wait and see type situation?

Jillian: Yeah, so they did an assessment on him and she basically said we can't diagnose him as type A or type B. You basically need to keep a very close eye on his skills and stuff. And if he starts to show any signs of regression, then call us, because that's . A telltale sign that he's gonna be type A. And we were told that there was no cure, there was no treatments for Type A. She also said she wouldn't be surprised if he had neurologic involvement because of, whatever testing they were doing at that appointment. She had a neurologist there assessing him too. Yeah. So we left there hopeful, he would have type B, but at the same time I feel like we knew deep down that 

That he was gonna have the more severe form. Yeah. 

Rhandyl: You just felt it in your gut. It's just, yeah. 

Deonna: And when, so when did you find out about that? Was it after you had your daughter or did you find out about both of 'em at the same time

Jillian: yeah, my son started showing signs of regression around age, one and a half. And at that point, our daughter, so before she was born, I feel like we started noticing things like he was having a harder time sitting up. And I think we knew okay, this is coming. Yeah. And then when my daughter was born, when she was a baby, he really started regressing more and more. And it happens very quickly. 

Deonna: Like quickly. Motor skills, regressing is that what you're saying? 

Jillian: Yeah. So the first thing we noticed was he lost the ability to sit up on his own. And then he used to be able to eat by mouth that slowly started becoming less and less. So now both of our kids are tube fed. Yeah. He used to verbalize a lot and now they're both nonverbal. So just a lot of things like that. Yeah. Yeah.

Rhandyl: So backtrack to, so you find all of this out. You are pregnant with your second, you know that your baby that you're expecting has a 25% chance that this is the same thing. Type A, type B, whatever it might be. Now, can they test this in utero or did you guys have any idea whether she had this same diagnosis prior to her birth?

Jillian: Yeah, yes. They can test in utero. It's something called an amniocentesis, which you guys are probably have heard of. And we did meet with a doctor about doing one. And it was a really there's no right or wrong answer in that kind of scenario. We met with her, she explained the procedure to us. She said that she was relatively safe, but she said there is a small risk of miscarrying. And my husband and I. Really struggled with do we get this done? Do we not get this done? What does it mean if she tests positive? Yeah. And I think ultimately for us personally, we decided that Stella was meant to be in our family. She was coming for a reason and for us, it wasn't gonna change the fact of whether or not we had her. Yeah. Yeah. Makes sense. It really wasn't, it wasn't gonna change anything for us, so we're like, why even take the risk? We'll just get her tested at birth. 

 we wanted to remain hopeful and like in an ignorant bubble. No, I get it. No, I get what you mean. Yeah. We're like, there's I feel like through that whole pregnancy too, we're like, okay, we already have one kid with it. The odds are in our favor with her 75% chance she'll be okay. It's not gonna change on the fact if we have her or not yeah, . And we're like, God wouldn't do this to us a second time. Oh, that's what our Oh no. Mentality was. And then, so I'm sure you can imagine when we got her tested, it was just soul crushing. Oh man. 

Rhandyl: Oh, I can only imagine. 

Deonna: Yeah. 'cause the math was in y'all's favor, so it just, I know. . Sometimes I'm like, I can't take another bad thing happening to me, and then another bad thing happens and you're just like, I don't know. It can feel so tough, like it's just too much to handle sometimes. I, oh, I just know you felt that way in that moment. That's tough. 

Jillian: Yeah, it was. And the worst part is that we were initially told that she didn't have it only to be called back a few hours later. Oh, shoot. And they told us that the lab ran the wrong test, so we had to get her tested again and.

That came back positive. It was like, 

Deonna: you're like, if that person needs to be fired. Okay. It was like, they just ruined my life. 

Jillian: It was like Pouring salt into a wound. It was, yeah. Oh my gosh. It was bad. 

Rhandyl: So that's crazy. So I will say my daughter. Yeah. I'm curious about how your second pregnancy was. A little backstory, my daughter, after she was born we received a genetic diagnosis with the whole, like my husband was a carrier, I'm a carrier. She had this mutation. They diagnosed her with a specific syndrome and then. Later on, a few years later actually that diagnosis was taken away because she actually doesn't present. It's so over my head, all the genetics. But it's so confusing. My husband's was unspecified and the actual founder of the Gene and the founder of the Syndrome, they all were sent medical records and basically we have in writing that she actually doesn't have this, but she's undiagnosed. So we don't know. 

But I remember the stress of thinking I would ever have another child. But I do remember once we finally, it was like five years later or longer when we did try but I remember my second pregnancy I feel like I was a. Basket case, and I can't imagine finding this out after you're already expecting your second.

I'm just curious, like how your mental state, which I know your main focus I presume was obviously on your son. That was, you were trying to figure out all these things, but you said that your first pregnancy was pretty normal. You were in this baby moon phase after, but in your second pregnancy how did you. Feel. Did you, were you guys just hopeful, like you said, or were you just, I don't know, completely a basket case of emotions? 

Jillian: Yeah. I was a basket case for sure, girl. But at the same time, who isn't a basket case when they're pregnant, honestly. Yeah. True. But at the same time I think that I didn't even have, I was so focused on this new, this whole new world that we had just entered into being a new parent and then being in this rare disease world, I'm like, what does this mean? You know how it goes you are getting, you have to schedule all these specialist appointments, get 'em into therapy. So I felt like I was continuously just doing and doing that. I feel like I didn't really even have time. My poor little Stella, I didn't even have time to sit and worry about what was gonna happen with her. Was that in the back of my mind? All the time. Yeah. Yes. But whenever , those feelings came up. I think maybe it was just me trying to protect my sanity. 

 But I would just be like, okay, God won't do this to us a second time. She's good. I'm gonna stay positive. Like she's gonna be fine. Yeah, I think during that time, I was just so focused on trying, to get my son the care that he needed and Sure. Figuring out what this new kind of normal would entail that I didn't really have a lot of time to fall apart or break down and maybe it was just my brain going into like survival mode. Survival mode. 

Deonna: It's crazy because a lot of people, I'll hear people say, 90% of the things you worry about never happen. And, they say those kinds of cliche positive, things or whatever. Yeah. But for us, it's not always, the numbers aren't exactly the 90 10. There's a lot of things that I worry about or think about Allie and then they do happen, or they very well could happen.

Like today we're getting retrained in CPR because I have. Actually done CPR on my own kid. It's just you had valid reasons to be pretty concerned that Oh yeah. For it was gonna happen for sure. And it ended up happening and it's just, oh man, I, it's hard when you know that you have a valid reason to be concerned about something and it could happen. Sure. 

Jillian: Yeah. That's next level. I think that's anyone with kids that have medical complexities or living with a terminal illness or rare disease. Mm-hmm. We're always it's a hard spot to be in. 'cause you don't wanna always be thinking worst case scenario, but like, no. At the same time, you have to be like three steps ahead all the time. When it comes to parenting kids like ours. 'cause you're like, okay, it's exhausting. It is. And I feel like people don't talk about enough, the mental and emotional, toll that takes on you. And it's something that just never goes away for. 

Rhandyl: No, it's a heavy load. You're in fight or flight constantly. Yeah. 

Deonna: And it can take really mundane things like today we're gonna go to my son's track meet. A normal mom is just gonna pull up into the parking lot and walk right in, but. With me. So my husband's a pilot. Sometimes he'll fly over the venue and scope it out for us the day before and he's like, where are we gonna park?

Where is it? Which, that's not a normal experience for most dads, but man, that's awesome. I know. I also love that. Can he kind do that for us? I know little outta 

Rhandyl: you. Get some drone drones, Jillian, we'll get some drones. We should do that. 

Deonna: For real. Like he just he's always flying around the city and he'll go check out and how crazy is that? But it's so funny because I've had to drive to venues before and go scope it out and see where are we gonna park? What's the vibe gonna be like, are we going to even be able to get in at all? And these are totally worries or concerns that most parents would never even consider. They just show up and live their lives.

But we have to think about, and it's exhausting. Like all day. I've been thinking about. This simple little task we have to do. And it's not that big of a deal, but to us it's hard, 

Jillian: Something as simple as going out to eat for us is like if we're going to a new place, we're very much creatures of habit now. Yeah. 'cause we're like, okay, we know this restaurant, we know that the tables are spread out, like there's room for their chairs. We can easily get them in and out. So when we're going to a new restaurant for something that should be so easy Hey, let's go out to eat. Yeah. Fun. It's supposed to be fun. Have to think ahead. Yeah. You have to , think about all those little things. And it does get exhausting for sure. 

Deonna: When you have two chairs, you're managing. I can't even imagine that because Yeah. Even just with the one, it's hard , and if you're by yourself, I wanna know how you push both of them. Is it like a train situation or like. How does that work? 

Jillian: It's actually logistically impossible for me to take them anywhere completely by myself. Someone unless, yeah, unless I'm going to a friend's house or my parents' house or something like that. But I can't take them. I can't just pack them both up and go to the grocery store. It's, 

Rhandyl: that's how I am with Remi. I've never in her eight years of life taken her by myself anywhere. Just for safety. I didn't know that. Yeah. Because if she has these major episodes and if she were to, decannulate in the backseat mm-hmm. or yeah. 'cause or start having, does she have a trach? Having a Yeah. So yes. Both our daughters have trachs. Mm-hmm. Okay. Yeah. So there's so many scenarios and it's just not one of those things that I've ever been able to do. I either have my husband and I or her nurses with us all the time. Yeah, I know just going to the grocery store with my toddler, I like, feel guilty sometimes because I'm like, I've never been able to do this with Remi, but it's just life and it's hard, like you said, just the normal day-to-day things. It's just a lot. So 

Deonna: I, I do take Allie out by myself, but I do remember they told you not to, like at Texas Children Children's They did. They were like, do not ever drive a trach vent kid that's this fragile by yourself. But I have to sometimes. But yeah, like the other day, . Her vent came apart from her trach while they, her and her nurse were going down the road. And I was like, oh my gosh. But they pulled over and it was okay. But yeah, ally doesn't have a big reserve. You gotta hook her up pretty quickly. Are your kids trach and vent or are 

Jillian: they're not, thankfully. We're not one less thing to do. Yeah. We're not there yet. And I have so much respect for people whose kids do my, I have a good friend whose son has a trach and like I know it's a process going out and there's just like a lot of additional worries. The only time there was talk of potentially needing a trach was my son, he was in the PICU for two months. This was a couple years ago, and he ended up having to get intubated twice. Oh man. And that, that second intubation there, they started discussing trach if he couldn't. Get off of the vent, and I remember how, how scary that was. You're like, great. But thankfully by the grace of God he recovered from that and they're both and that's in large part too. We've ended up getting them on two different treatments.

That has really,

Rhandyl: I was to ask, because I know there's a lot of trials out there for rare disease. If I was going to ask about that if you guys have gotten what of, what do they do? Yeah, 

Jillian: They're on, they're both on an enzyme replacement therapy, so they get biweekly infusions. We used to have to go to the hospital every other week and get them done, and they're about four hour long infusions. So the whole day. Was about six to eight hours at the hospital every other week. Every other week, yes. And we actually just transitioned though to home infusions, which has been way nicer. Oh man. Life is changing. Oh my gosh, yes. Life changing for sure. Just from the ex I feel like our kids were getting sick all the time, being at the hospital that much. Oh, yeah. Just like the, limit of exposure to germs was huge. Yeah. 

Deonna: And just the hassle of taking two kids to a just major hospital. Like we just said, the parking alone would be Oh my gosh. 

Jillian: Yeah. I like to think me and my husband had it down to a science, it was just routine for us. Yeah. But yeah, it was not a fun day. It was a long day, boring day. I feel like being at the hospital in general is just like soul sucking. Like I'm always so exhaust, exhaust. 

Deonna: Yes. If that's where you got all your bad news, then you have to go back in there. And that's how I am at Texas Children's. You walk in and it's every time, even though it's years out from her paralysis. Yeah. Like you just, you walk in and all those bad feelings and the smells and the, everything just comes back to you.

Rhandyl: For sure. Yeah. So they, how long have they been on these treatments? 

Jillian: Okay, so I'll back up for a minute. So my, yeah. When we took our son to see that specialist in New York, she had told us at the time that there was a drug that was in trials for the non neurologic aspects of their condition. And it was showing good results. And this was the enzyme replacement drug. I was like, great, how do I get my son on that? We want to get him started like yesterday. Yeah. So she was like, the trials are full, there's no way for him to gain access to it. So we left there and we're like, okay, she said that it's not possible, but I'm gonna find a way.

And we got home and like it was a year long process of advocating to the drug company, our doctors. Yeah. I had to basically present it to our doctors because they had to be the primary investigators on it. Long story short, we ended up getting access through a compassionate use program. And my son started the infusions when he was two and my daughter was able to start a few months before she turned two. So she started a little before he did in terms of how old they were. Yeah. And then. We knew with that drug that it was showing great results reversing damage done from the neck down, but it didn't cross the blood-brain barrier, so it wasn't gonna slow down their neurologic disease.

Which is where part two came in. So we ended up finding another investigational drug that, was an oral medication which we pushed through their G-tubes, but it was shown in mice to slow down or potentially stop the neurologic disease progression of ASMD wow. So it was another year long situation of trying to get through all that red tape. And we got them started on that one. They've been on it for two and a half years now. And their infusion drug was actually approved recently by the FDA as the first, FDA approved treatment for their condition. So Oh wow. That's exciting. Yeah. So it was, yeah, it was very exciting. So yeah, and the other medication, we've definitely seen benefits from it. It's just hard because there's so many unknowns with it. Yeah. We don't know how effective it'll be. We don't know what the right dosage is. There's just so many unknowns. So we're learning as we go and working with our doctors to adjust things when need be. Yeah. Yeah. 

Deonna: That's cool that you're, I think it could help your kids a lot, but it's cool that you're also willing to let your kids try a new drug that could help future generations of what Rhandyl does, how she puts it into the network and things like that. You don't, yeah. You don't always n 

Rhandyl: that you advocate what's gonna happen. So hard for, yeah, I, me too. Because I know those trials are so hard to get into and it's scary to start your kids on something that may not be FDA approved, but going back to originally, the prognosis you said they told you they may not live past three and then, now they've been on these. Treatments. And now they are five and six. 

Jillian: Yeah. It's, that's crazy. It's definitely, it's really cool to see how they're little pioneers and they're so brave and I feel like they're really changing the trajectory of this disease for future generations, before our eyes. Yeah. So that's just something that makes me so proud every day and yeah, I'm just so proud of them. 

Rhandyl: Okay. So Jillian, how do you handle the stress of it all? And not only that, but your other family members, your husband, how do you guys manage the stress revolving the diagnoses? 

Jillian: So I would say in the beginning I wasn't handling the stress. I think I was I. Basically just surviving, we were just in survival mode. I think years into this now caregiving is a full-time twenty four seven job, and it's really hard to find time to decompress and time for yourself. And that's so important. Like you need to turn that your brain off and get that mental, physical, emotional break for a little bit. And we have nursing now that comes throughout the week, thankfully. They're here from like eight 30 to four 30. 

And that has been huge for me in terms of just being able to leave the house because like we were just talking about I can't just pack up my kids and go. Shopping or do something to decompress. Like I, yeah, I don't have enough arms for that. So I think that's been huge. And I really, at first I felt a lot of guilt, leaving the house, even though we had nursing here, I just felt bad. I don't, I totally feel that. And I would leave for like, I'd be gone for like an hour and then like, okay, I need to get home. I just I would have this like panic that sets in. I've been gone too long. 

And now I'm realizing that I really do need those breaks and I need to take advantage of that time. I also have found a lot of ways throughout the day, like even if I say I don't have time to leave the house for an hour, I'll go on a walk across the street or get outside for a little bit. If I have work to do, I'll go sit outside. Those are all. Ways that I can decompress Yeah. That fit into my caregiving crazy schedule. Or even something as simple as I'll get one of those bath bombs or shower bombs, toss it in the shower and pretend like I'm in the spa for a little bit. It's, there you go. It's just like finding simple simple things like that to fit in throughout my day. 

And as far as I think my husband and I have handled things differently on different timelines. I feel like I, I don't know if this is similar for you guys, but I feel like I processed through things earlier on and got to a better spot a little quicker than my husband. I think at first when I was falling apart, my husband was there. I. Trying to talk me up and yeah. And then it we switched roles and I feel like it's like that throughout this whole journey, we can never both fall apart at the same time. One totally agree. That's one falls apart. The other one kind of talks you off the ledge and then it flips and it's he's been like a very instrumental support for me, obviously throughout this whole thing. In the beginning I felt very I don't wanna say clingy to him, but I was very dependent on him in the beginning because Yeah. I felt like he was the only other person in this entire world that knew what I was going through. Yeah. Of, and I lean on him a lot. 

Deonna: In a way he was on a really specific level. He was. 

Jillian: Yeah, exactly. And I think we're very close with our family too, and. They want to understand and they do on some level, but they'll never fully understand like your spouse or significant other does, 'cause it's your kid, 

Deonna: it's just a different pressure. And like that's how our family is. They understand from the outside, but at the end of the day, it's on you, it's on your husband. Like it's very different, yeah. The pressure and we've called it like crushing responsibility, yes. That they don't understand fully. Yeah. It's, yeah, it's tough. 

Jillian: And Thankfully though, like our family has been very supportive and they help whenever they can. Great. My, my mom and my mother-in-law will come over and they're older now. They can't, our kids are thankfully getting bigger, but they're very heavy now, so they can't like lift them, but they'll come and sit and read to them or snuggle them so I can shower or do Yeah. Yes. Do things that make me feel good. 

Deonna: It's a support thing. Yeah. I relate to what you said about just taking a little bit of a minute for yourself. You don't have to have these big moments where you go on a whole week long vacation or something, but Yeah. If you get to do that, whoa, yay for you. But I, like that's, I've seen this a lot where people say, just have one thing to look forward to every day. And I do that too. I'll pick one thing every day and be like, I'm looking forward to drinking tea while I read my book, or I'm, whatever. Or watching a show late at night and Yep. It really does help you get through the day knowing you have something for yourself. 

Jillian: And I, That's being practical too, like our, it's not practical for us to go on a week long vacation away from our house. That's not. That's honestly probably never gonna happen if I'll be quite honest.

Although I did recently last October, I did do my first weekend, solo trip away. Nice. That's exciting. That game changing for my mental health now, but it can happen. It was just you? Yes. It was just you. It was just me. Where'd you go? I met up with my I went with a few of my cousins to Salem, Massachusetts. I've always wanted to go to Salem, in the fall and I was like, you know what? I deserve this. I'm doing it this year. And was it creepy? We met up there for a weekend. It was so fun. Oh my gosh. 10 outta 10 recommended it. That's so funny. It's a little crazy during Halloween, but it's believe it.

It's so fun. 

Rhandyl: One of my best friends went, During Halloween this last year too. Yeah. Loved it. I would be scared. 

Jillian: It wasn't scary. It was more fun and just like Gilmore girls feeling. Yes. All the cheesy halloweeny things. That's so funny. 

Rhandyl: Yeah. I love it. I think back to, like you said with the nursing that, and I am pretty sure Deonna would agree that is the number one, biggest stress reliever. But I think in the beginning it was like you said, the guilt was so bad. Yeah. But I just remember once we got Remi home from the hospital, I did not leave my house one time for almost three months or a little longer. Yeah. And it was, my mental health was just terrible. I was just in fight or flight mode all the time. Yeah. Yeah. 

Once I finally let go and started trusting, we, got a good nursing staff in the home and then I was able to relax a little bit, leave the house for just a little bit. And then, , as everything's progressed, and of course my daughter's not as medically fragile as she was back then. I think it's just, it took, it's a whole process. Yeah. But , it's definitely. It helps really. It's needed so much pressure and Yes. Yeah. Especially for kids with medical complexities and thank goodness that you're in a state that it supports private duty nursing. We say we have it, but we don't always have it as a, we all know it's not a guaranteed thing, but whenever they're there, it's really helpful. 

Deonna: The, whenever they're there, yes. It relieve stress and causes stress when they're not there. Yeah. I told my friend Camie that we've talked to in the past, I'm like, they relieve so much stress for me, and I love it when they're there, but the second one of them calls in, I instantly go from happy to like, oh no. And I hate that about myself. Yeah. And maybe y'all aren't like this, but I instantly just get like anxious and I'm panic like, oh my gosh, now I'm gonna have to do this all by myself. And I, and it's always when my husband's out of town or working nights always. Yeah. Like it's never when I have help or support like ever.

Jillian: Yeah. It's never, yeah. It's never at convenient times. 

Deonna: Never. . So what in are some of the hardest parts about raising your kids with this diagnosis? 

Jillian: I think for their diagnosis in particular, one of the hardest aspects of it is dealing with the grief that comes along with watching them regress. I always tell people , it's a special type of hell to watch your child just lose their skills day after day. And yeah. It's sad. Like it's, but on the flip side, I also know that a lot of other families don't even get I feel blessed that we had, even if it was a short window of time we had that window of time to truly see who they were before their disease really progressed. Because I know who they are deep down, and I'm so thankful that I got that time to see their personalities and they still have their own little personalities, but I. It's just a little dimmer now. Which is it's heartbreaking. It's definitely the most heartbreaking aspect of this condition. 

I think that, and then coupled with just their ever changing needs like when I think back, we would go to get them a specific piece of equipment that they needed and, how long that takes to get through insurance and all that. Yeah. So we would order them something that worked for them at the time, and then it comes in six to eight months later and they're, they have their needs have surpassed what that piece of equipment can offer them now, or they've added, oh my gosh. Yeah. It's just, that was another difficult aspect of their condition to deal with. But yeah, I would definitely say the regression was the roughest for sure. 

Deonna: I relate to what you said about getting this little glimpse of who they really were because my daughter was paralyzed when she was four, and I got this glimpse of who she maybe would've been it. I don't feel that way anymore. Yeah. It's almost like this person that died and I don't know them anymore, but Yeah. You know, And now she has this new personality, but like what you said, it is a little bit dimmed to me now. I don't think other people feel that way. They get to know her and they're like, oh, she's fun. Whatever. Yeah. We knew the old Yeah.

And so we watch these old videos of her and you're just like, man, that, that girl's gone. She's not coming back. And she is really fun. But it does bother me sometimes people will say oh, she's exactly the same as she was before and I'm like, no, she's really not. Physically way different, yeah. Like it's just, yeah, the dim, I get that. 'cause , that's , been our experience too. For sure. 

Jillian: Yeah. It's really, it's heartbreaking. It's brutal. Yeah. But I know I do try to think about not trying to be like, give toxic positivity or anything, but I do try and think about there are some babies that are like born. Like that. Like that they they, oh yeah. Their parents never truly get to know who they're Right. Who they are deep down. Yeah, I don't know. That's a way that Lucky I try and we lucky in that way. Yeah. I try and but at the same time it's you know who they were before and it, you miss that so much. It's taking Oh, taking away.

Deonna:  It's like a loss. It's a different type of loss, but I, yeah. I know what you're saying for sure. But it's brutal. But, and it's hard for you because like mine was all. Really quick. It was like she was one way, she boom was a different way and it hasn't, there have been changes and stuff. But yours are more progressive and so you just, yeah. The unknown and the anticipatory grief is brutal. Like we all three are living in this thing where we don't know. How old they're gonna be, when's gonna be their last day? Every emergency, me and Rhandyl. And you have, you're like, oh crap. Is this it? This. This could be it, 

and yeah it's like someone who knows their family member has cancer or something. You're just waiting and it's a really tough, it's like a weird limbo. I, that's how I feel like you're just living in this little limbo of Yeah. And trying to, hoping they'll stay for a while, but like we say, we're in overtime with Allie and that's how we view it. She probably should have died back in 2020. She didn't, so we're just getting this cool overtime experience with her. But you just, yeah. 

Jillian: That you're so thank, you're so thankful for it makes you really appreciate every moment that you get with them. Yeah. But at the same time, it is. It is I so relate to you saying like any little thing that happens, you're like, is this it? Is this yeah, my, that's where your mind instantly goes and that's it's a tough way to live, it is, yes it is. 

Rhandyl: But then in the same way, I feel like us parents with these medical complex kids, we don't take things for granted. And try to find positive thing.

For you, Jillian, what are some of the positive, unexpected, surprising moments that you have experienced with your children? 

Jillian: Oh my gosh. I've, I have seen so much good in humanity through this experience. There's just you don't realize like how many, it's so easy this day and age too, right? Because the world is on fire to like only see the negative aspects of humanity, but I've seen so much good in people and that's something that I feel so blessed to see and witness. The way our community rallied for us and like to just total strangers that I've never met before. I didn't realize there were such kind people out there. So that's been definitely a blessing. 

And just what we were talking about before, I feel like when your child is living with a terminal illness or medical complexities, you just get this deep appreciation for the present. And the now that I don't think I would've acquired if my kids didn't have their diagnosis. As bad as that sounds, maybe I would have. Yeah. But I don't know. I feel, I totally agree with that. I feel such a deep appreciation for. Life, like the smallest things, like my my kids now, if they, they don't smile as much now, but when they do, we're like, oh my God, that just made my entire freaking year. Like seeing them smile one time. Or move their hand up to their mouth. We're like, oh my God. You wouldn't get excited about that kind of stuff 

Rhandyl: if No, you had a, it's the little things, 

Jillian: it's, yeah, it's the little things. And I also would say I've just met some of the most incredible people and parents and the friendships I've made are just on another level. I think you're able to connect with other. Parents of medically complex kids on a level that is not just surface. Like it goes to genuine. Yeah. Because you have, I just met you guys today and I feel like we, we share the same exact , deep emotions that Yeah. And experiences. And I just feel, I hate what has brought me to some of these people the circumstances. Sure. But I also wouldn't trade these friendships for the world and Yeah. I've just been able to meet some of the most amazing people. 

Deonna: You become fast friends with people 

Rhandyl: for sure. Yeah. And it definitely helps, at least for me, you've filter out people in your life that, are not as genuine. As I probably would've had, had I not experienced something like this as a caregiver. Yeah. 

Jillian: I feel like it's, there's no room for BS, like it's Exactly, you find the people that really care and you hold onto those people. Yep. But then on the flip side, you find the people that maybe weren't so great and you don't really need them. Yeah. And then there's people that surprise you. Like I've gotten really close with some people from high school that I. I wasn't necessarily close with in high school, but they have just shown up for us in such a beautiful way. I'm like, you are amazing. 

Deonna: It's crazy how some high school friends like come out of the woodworks after I know, right? You have something bad happen to you and then all of a sudden they are talking to you again and you're like, okay, yeah, I, yeah, I'm like that like I used to be so like, like a doormat and people just could treat me bad and now I don't take the BS either. If somebody I doesn't treat me well, I'm like, I'm done messing with you.

We're you don't wanna waste doing this. Yeah. 

Rhandyl: You no energy for that. 

Deonna: Yeah. No energy left over to waste on people who are just silly. But yeah, , I do think there's a song I like by Zach Williams and in it, I've talked about this before, but he says, I've been saved from who I used to be. And I don't think any of us used to be bad people or anything, but it's just, we were just coasting through life and. I didn't care about the disa disabled people, and I have ms. You'd think I would be all caring about that, but I just, I don't know. Like I'm glad I get to be a part of this movement now, but the way here was rough 

Jillian: yeah. And I feel like it's not you don't care necessarily. But if you're not personally affected by something, it's hard mm-hmm. to like, you know, I, I don't know. You don't get it. Yeah. You don't understand. And yeah, no, I totally get that. And I honestly feel like our kids have made me the best and strongest version of myself that I honestly, I don't know who I would be without them right now, yeah. Yeah. 

Rhandyl: And like Deonna said, I think, all three of us we. are spreading awareness through our podcast, our social media, , partially because we, before this happened to us, had no idea what this world was like. And anyone that is listening, we're giving them a glimpse into, what our real life is and our real feelings and our raw emotions. I think that the more people and the more awareness and inclusion and this movement is going to just make this world that's on fire.

Yeah. Better. Yeah. A little better. Mm-hmm.

Jillian: We I feel like that too. I feel like it's. So important at least for me to share our kids on platforms like that. Not only for fundraising, but also I want my children represented, like their lives are worthy and they're Yeah. Full of meaning. And I think that it's easy for people to gloss over kids like that. And I feel like they have so much to offer this world, and they don't have their own voice, so I'm gonna be their voice for them. And I feel like I, I just love when other parents are willing to share their children's, experience with the world because it is important to represent these people.

Deonna: Yeah. Oh, for sure. So what has helped you the most as a parent and then what has helped your child the most? I to, I know we talked about how you live in a town within amazing hospital. It was voted the number one hospital in the nation. Yeah. And so, I mean, you can tell us a little bit about what that hospital's kind of meant for you, but what has helped you and your child the most too? 

Jillian: I think for me personally, it was getting a shift in perspective that has helped me the most. Like in the beginning it was so easy for me to just spiral down the black hole of grief and fear of the unknown and. Focus on everything that we were losing rather than appreciate everything that we still had. Yeah. And I think that making that shift in perspective was game changing for me and just my mental health and just being the best parent that I could be to my children. So that's I'd say that's what helped me the most.

And then in terms of my kids, we were talking about our children's hospital finding. The right care team, medical team mm-hmm. that is going to be a champion for your child, I think is so important. And I feel so blessed that , we found a good core group of doctors that are willing to collaborate with us as parents because when it comes to kids with medical complexities or rare diseases, there's so many unknowns and I feel like parents and doctors and like medical professionals, they have to be a collaborative team to give your kids the best possible care. For sure. Yeah. And it's hard to find doctors that you vibe with that make you feel comfortable, that respect you. I wish it wasn't so hard, but. Listen and yeah. That, that listen to real 

Rhandyl: and realize that you know your child better than they do and Right. Any than anyone. 

Jillian: Yes. You hold onto them. And I always tell people, I'm like, don't be afraid to fire a doctor is not meeting your expectations. I'm not gonna lie. There's ones that I've held onto a little longer than I should have just because I felt bad. And at the end of the day this is my kids' care. I don't care about your feelings, like we're, this isn't working, so I'm gonna find somebody that, is willing to work with us. So I'd say that finding their medical team that cares so much and is willing to. Put in the time and effort to get our kids on these experimental treatments. Yeah. All of that stuff. That's, it's been probably the best thing for them. Yeah. 

Deonna: It is funny how we get so worried about doctor's feelings. I had so many moments where I have really hurt a doctor's feelings because I was afraid they were gonna cause harm to my kid. And I was genuinely worried about this yeah. Little man's feelings and it's just so hilarious to me now, but Right. You really do get caught up in that. Like they're really, I don't know, like we always feel like doctors have this power over us, but they really don't. But it's hard. 

Jillian: They don't, and honestly in terms of rare disease, the parents. Usually know a lot more than the doctors for sure. And same that just goes for any child with medical complexities. We're the ones caring for them every single day. You know them better than these people that see them for an hour once every six months. Like it's, yeah. Yeah. I don't know why we even think about their feelings, but, 

Rhandyl: I think it's a learned thing. I've said that it's adv advocacy is definitely a learned thing, so For sure. 

Okay. So besides advocacy and firing doctors what advice would you give a parent that maybe getting this diagnosis or any difficult diagnosis? 

Jillian: I would say don't be afraid to feel it all. There's there's sadness, there's anger, there's fear. But don't let that steal your joy because I promise you anyone listening that's maybe early on in their diagnosis or journey and are just feeling completely overwhelmed and depressed I promise you that they'll be so many moments of joy. And just don't let the grief overtake you to the point where you're not present for your child. 

I would also say too, I'll reiterate how important it is to just find your people and find that community that understands what you're going through. I know like how incredibly isolating it feels at first. Yes. You feel like you're the only family dealing with something like this, and that is, yeah. So far from reality. There's so many families that go through a similar struggle whether it's through social media through local support groups, national organizations, there's, so much stuff out there to get connected with other families, and it's something that I wish I would've done a little sooner. But on the same token don't push yourself before you're ready. 

Yeah. Because I know for me personally, I felt like I needed to be reaching out to all these people and connecting, but I just wasn't there yet. , I think I had to take the time to process everything on my own. Because I feel like I did live in a little state of, I don't wanna say denial, but oh, I did, I guess maybe it is denial. Yeah. You're you don't wanna accept. I just remember early on, I joined some Facebook groups for other families. With kids living with ASMD and I would see somebody post about their child and their child looked so sick and I just remember getting on there and getting so depressed and then I would be like, that's not gonna be my kid. That they're not gonna look like that. They're not gonna go through that. Yeah. And I think it is your protecting your, I don't know if it's like a survival technique or what to get you through those really shock times. But definitely take the time to process things on your own and reach out to people when you're ready. But I promise when you do, it will make a world of difference. 

Rhandyl: That's great advice. 

Deonna: Yeah, that is, What I was gonna ask you really quick before I ask you this question, but what's the amount of people in the US that have this exact diagnosis? Do you know that, 

Jillian: So the more mild form type B is a little more common, it's still rare. And I'm not sure of the exact numbers. I wanna say it's like one in 250,000 or something. But then type A, the more severe form, I only know of four kids in the US that have it. Oh, wow. 

Deonna: So it's not common at all. Okay. 

Jillian: Yeah, no the Type A is definitely a lot more rare. And it's such a small community that we always know who, oh, this person just got diagnosed or yeah. So I only know of four kids right now in the US that have it, and two of which are mine. Wow. 

Deonna: Oh God, not four other kids, but just years and kids. Yes. Oh, that's fun. Yeah, so two of them, yeah. It's like we, Rhandyl's child's undiagnosed and then mine, I feel like kids who become disabled, a lot of people get paralyzed or have amputations, and those are the two feel like big things that happen to everybody. And but even that I feel so isolated and my kid has a very quote unquote common injury in a way that everybody knows what it is and it still feels isolating 

Um, what resources or advice would you recommend to a parent who is facing the same challenges? Either the specific ones to your child or just generic, 

Jillian: I would definitely say find that care team that you trust and that you work well with. And then I would also say for us personally, our children's diagnosis, they have a national organization and that was the first organization that we reached out to. And they were a huge resource for us, not just in terms of funding things but they have a list of specialists. It's really a good starting point if your child does have a diagnosis and national, what is that called? Theirs is the National Neiman Pick Disease Foundation. Okay. And they were able to connect me with other parents early on and honestly, you learn the most from other parents.

Yeah. So yeah, they were just a huge help to me in the beginning for sure. And then they offer family conferences every summer, which we started going to, and that's been, that's cool. So fun to just be able to be it's one thing to connect with people online, but then it's another thing to , be with them in person and be able to hug them and connect with them face to face. I would definitely suggest that. And then something I wish that was mentioned to us sooner than it was is that our children's hospital has a financial aid department that they were huge for us in terms of getting, like we didn't know about Medicaid waivers. We didn't know about all these resources out there that were there in place to help families like us. Yeah. And just walked us through how to apply and do all that stuff because all of that can feel so overwhelming. And when you're dealing with a new diagnosis, you don't have the time to research all this stuff. 

Rhandyl: No, and it's, there's so many loopholes and red tape and everything and it's yeah. Finding so someone like that 

Deonna: and you have to practically have a master's degree to fill out the paperwork. It's Yes. Crazy.

Jillian: It takes forever. So just having somebody. Again, we went the first year without knowing any of this existed. So we just getting oh no. A million dollars later. Yes. And once we've connected with them, and I would assume a lot of hospitals do have a department like that, or maybe you could talk to like social workers or something, but that was like the big ones probably do. Yeah. That was a big benefit to us and just a huge help for sure. 

Deonna: Yeah. Oh yeah. We talked in one of our most recent episodes about case managers are there for a reason. Yes. Use them. Let them do all your dirty work while you Yes. Relax. Don't kill yourself. Trying to figure all out on your own. Yeah. For sure. 

Rhandyl: Yeah. That's great advice. Okay, so , you're an author, ? And how many books have you published? 

Jillian: I just published my first one. Okay. It is a children's book. It's called Soaring Together. I have a copy here. So I wrote it. It's obviously all inspired by my two kiddos in the journey Yeah. That we're on. 

Deonna: Is that butterflies on the cover? It is, yeah. So it's, I love butterflies Now's, I don't know, they just connect to me with disabled kids for some reason. 

Jillian: I know they're so beautiful. , it's called Soaring Together, A Butterfly Family Story of Discovery, love, and Resilience. So it has all of those themes in it. And more or less, I wanted a way to introduce disability to young readers in a approachable and uplifting kind of way. It's through obviously a family of butterflies and the the brother and sister Butterfly are so excited to bust out of their chrysalis and then they realize they can't fly.

So it's all it introduces disability in that way. And then there's underlying, oh my gosh, names of resilience, love, and, I don't everything that we've learned. Perspective. Yeah there's a nice little theme in there for shifting your perspective for parents too, which I really like. Yeah. 

Deonna: Is it on Amazon? 

Jillian: It's on Amazon right now. So you can buy it on Amazon. Barnes and noble.com. And walmart.com. It's available on there. And. I just found out that it's actually gonna be in the Cincinnati Zoo gift shop very soon. Oh, fun. Yeah. Which is Oh, yay. Really exciting. And then it's also available at a local bookstore here in Cincinnati.

Rhandyl: Awesome. Oh, we'll definitely. Yeah, we'll have to share that. Yeah, we'll put that in our show notes, the link. That's awesome. 

Deonna: I'm gonna have to buy that. 

Rhandyl: Me too. 

Jillian: I'll send you guys a copy. 

Deonna: Nice. , after Allie got hurt, I started seeing butterflies all the time and it was like winter and you just see these butterflies and it just felt like it's gonna be okay.

I don't know you know how you have those weird like signs the, from God, the signs It's, yeah. But butterflies her last drawing ever before she got paralyzed was a butterfly. And I have this little drawing that we ripped off a folder and hung in her room. And my friend Brielle.

Turned it into a stained glass like art for us. I love that because it's just, yeah, I don't know, like butterflies just have a, I don't know. I love 'em. 

Jillian: They're a symbol. I like them 'cause it's a symbol of hope and transformation. And I feel like I feel like me personally and my husband, we've both changed so much for the better on, on this journey. So yeah. I felt like butterflies was just fitting very, that's cool. I'm excited to read that. That's cool. Yeah. 

Rhandyl: Me too. 

Deonna: Thank you. Yeah. 

Rhandyl: Okay. So Jillian, just to wrap it up, we like to ask our caregivers what is the best thing that has came out of this situation for you? 

Jillian: I already talked about a couple of them, like giving me a different perspective on life, a more meaningful perspective. I just see life differently now. I don't take little moments for granted, which I think is such a gift. 

But in addition to that, I would say that being Roman and Stella's mom has given me a. New purpose in life that I never really saw coming. Through sharing our story, my podcast, creating the book, being able to connect with other families. I feel like I've been able to turn a really painful and difficult situation and turn it into something that helps others feel seen and feel a little less alone. And to me that's just incredibly meaningful. And also my kids have just changed me in all the best ways. I've already talked about this a little earlier, but they've just made me the strongest version of myself and yeah, I'm just honored to be their mother.

Rhandyl: You are a great mother, a great advocate, great caregiver. We thoroughly have enjoyed this conversation and getting to know you a little more. And thank you so much for sharing your story and we love following your social media. Our listeners, you should definitely follow along on their journey and tune in to Jillian's podcast and we will link everything in our show notes.

But thank you so much, Jillian, for taking your time with us today. 

Jillian: Thank you so much for having me. It's been really great talking to you both.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.