Nov. 6, 2025
Elizabeth Lounsbery on The Mompreneur Model with Dori DeCarlo
Liz Lounsbery navigates the unique challenges of military life while fiercely advocating for her daughter Isla, who lives with multiple rare diseases and disabilities.
Liz Lounsbery is a mom on a mission. As an active-duty military spouse and mother of three, Liz navigates the unique challenges of military life while fiercely advocating for her daughter Isla, who lives with multiple rare diseases and disabilities. From fighting for accessible healthcare to ensuring Isla’s voice is heard in a world that often overlooks medically complex children, Liz’s advocacy is rooted in love and a deep belief that every child deserves a joyful, dignified life.
Liz is passionate about bringing awareness to the realities families face within the rare disease and disability communities, highlighting the gaps in care while celebrating the everyday victories that matter most. She also understands the quiet strength it takes to hold a family together while facing deployments, moves, and the uncertainties of military life.
When she’s not navigating medical appointments, therapies, or IEP meetings, you can find Liz soaking up the chaos and sweetness of everyday moments with her children, scrolling with a coffee in hand, or finding small pockets of rest through reading. Her story is one of resilience, humor, and the relentless pursuit of a world where every child, regardless of ability or diagnosis, can thrive.
Join host Dori DeCarlo on The Mompreneur Model and follow Liz on at Elizabeth Theresa on Facebook and elizabeth.louns on Instagram.
Please support UnsilencedVoices.org a global 501(c)3 nonprofit that empowers survivors of domestic violence, sexual assault, and human trafficking.
We thank Smith Sisters and the Sunday Drivers for our theme song, "She is You".
Be sure to connect with us come tell us your story!
WordofMomRadio.com - sharing the wisdom of women, in business and in life.
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WEBVTT
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She is sure, she is true, she is straw is straw,
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She is true, is true, she is praise, pray, she
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is she is you.
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Welcome to today's Word of Mom Radio. Here on the
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Word of Mom Media Network. I'm your host, Dori Di Carlo,
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and you know we are here, show after show, week
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after week, just breaking those myths that moentpreneurs and business women,
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especially those of us building our businesses from home, that
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we're just dabbling in between bake sales and getting our
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nails done. We're not. We are smart, we are savvy,
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and we are sharing the wisdom of women in business
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and in life. And today I am bringing in somebody
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who is near and dear to my part and has
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a message that we need to be sharing. Liz Loundsbury
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is a mom on a mission. As an active duty
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military spouse and mother of three, Liz navigates the unique
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challenges of military life while fiercely advocating for her daughter, Islah,
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who lives with multiple rare diseases and disabilities. From fighting
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for accessible health care to ensuring Elah's voice is heard
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in a world that often overlooks medically complex children, Liz's
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advocacy is rooted in love and a deep belief that
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every child deserves a joyful, dignified life. Liz is passionate
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about bringing awareness to the realities of famili's face within
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the rare disease and disability communities, highlighting the gaps in
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care while celebrating the everyday victories that matter most. She
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also understands the quiet strength it takes to hold a
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family together while facing deployments, moves, and the uncertainties of
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military life. When she's not navigating medical appointments, therapies are
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IEP meetings, you can finally soaking up the chaos and
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sweetness of everyday moments with her children, scrolling with a
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coffee in hand, or finding small pockets of rest for reading. Really,
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Liz's story is one of resilience, humor, and the relentless
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pursuit of a world where every child, regardless of ability
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or diagnosis, can thrive. And again, you know, Liz is
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somebody I know on a personal level, and her husband
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is one of my bestie's son who I've known since
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he was five, and her little girl, Alah is the
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most amazing, little fiery redhead she will ever see. So
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with all of this being said Liz, Welcome to Word
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of Mom Radio.
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Thank you, thank you for having me.
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I am honored to have you. I'm proud that you
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are doing the advocacy work that you are doing. And
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I really love people to understand that with everything going
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on right now, with the big beautiful Bill and the
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things that have been cut on medical services and needs,
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especially for our special needs community, that even a military
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spouse is not above what has been cut. So I
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would love for you to just kind of take us
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on your journey that she be a life in Ila's
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story and what it looks like for you.
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Sure, she and my oldest son are fertility kids. We
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had multiple tribes of getting pregnant and it never worked.
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So we went through the fertility route, which was a
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pastile to begin with, because insurance doesn't really cover that
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either because they don't really see and fertility as a
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disease either. So that was the start of our uphail battle.
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And then you know, we got pregnant with Ila, and
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up until about thirty two weeks, everything was smooth sailing,
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everything looked great. She was measuring small, but we didn't
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really think anything of it because my side of the
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family is small. I mean, my husband is not. He's
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six feet and all of his siblings are tall. But
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I was like, well, you know, my nieces and nephews
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are tiny. We went in for a regular anatomy check
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and they scanned from her brain to her spine multiple times,
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and it was in that moment that I was like, Okay,
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well something's going on. So at thirty two weeks she
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was diagnosed with ventricomegalie and from that moment on it
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was just on the fast lane. Thirty six weeks, I
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had to get an MRI done on her to make
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sure that she didn't have a stroke in utero. Thankfully
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it did not. She did not, She just had enlarged
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ventricles on both sides. She was induced at thirty nine weeks,
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but she came out as measuring as a baby. That
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was thirty five weeks. So we spent two and a
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half weeks in the NICU. She was on a ventilator,
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she was on a breathing machine. She had to go
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home with a heart monitor because while one of the
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walls in her heart chambers hadn't closed fully yet. Because
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she was so small, she only weighed just at five pounds.
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So from that moment on we entered the medically complex
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world and we were not expecting any of that when
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we had our second child, and it was from that
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moment on we got testing had She met with three geneticists,
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and each time it would come back as inconclusive. It
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wasn't until her third birthday that we got the notice
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that something had popped on her genetics screening. At that moment,
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she was diagnosed with van Maldegrin, which is so rare
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that it is made maybe like one in twenty kids
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in the entire world. And then she was also diagnosed
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with Brock syndrome, which is also very rare, and she
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has extremely fragile bones, so any small ball could shatter
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her bone. She's had five surgeries in her four years
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of life. On her right leg, she has cerebral paldy.
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On top of all of that, she is hard of
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hearing on her right side. She is somewhat wheelchair bound.
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She uses the wheelchair as her main mode of transportation,
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but when she's out and about she is scooting and
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crawling like nobody's business. And then right before she started preschool,
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she got an autism diagnosis as well. So we have
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been head first and everything.
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I remember the video when Aila got her wheelchair. Yes,
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I's found out that you know what, this is something
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that she's gonna need. And she took off after her
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two brothers like the fire little redhead.
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She is.
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Video and show of her after surgeries and there she
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was on her crutches trying to catch them. She is
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an amazing little girl.
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Yeah, she does not. It's always so funny because every
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time she has her surgery, you know, they give us
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the letter rest and her orthopedic is like she's never
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she's not gonna wrap. We just have to realize that
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we have to put her in a cast because if
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we don't put her in a cast, she's just gonna
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break another bone. So she it does not slow her
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down at all. I wish sometimes I wish it did
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because it's exhausting. Try to like make sure that she's
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not jumping on the trampoline with a broken leg. I'm like,
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can we tame it a little bit, Let's take a break.
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But if you were just to look at a video
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of her and not know and just see her playing,
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you would never know that she's had five surgeries. You
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would never know that she has been developmentally delayed her
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entire life. You just wouldn't. She doesn't really let it
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defind her, and neither do her brothers. Like they know
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she's KOOKI they know that she's kookie, but they don't
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let her get away with anything, like if she wants
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to wrestle with us, okay, we're gonna wrestle back, Like
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you don't get to just you know, throw your hands
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and then hide them when it's time to get in there.
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So she is just very full of spirits, and it
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took us a long time to be okay with her
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being in a wheelchair.
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Only.
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I think it was more hard on Mike and I,
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my husband and I, than it was on her because
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we had all of these visions of like what our
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little girl would do. Oh, she's gonna join the dance team,
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she's gonna do gymnastics, and then to just meet a
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brick wall and be like, no, she's actually gonna be
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in a wheelchair. It was really hard for us. I
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probably more me I will be one hundred percent honest
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than Mike. But the moment that we put her in
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that wheelchair, she lit up because she didn't have to
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rely on me carry her. It lifted like a huge
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burden off of us that Okay, this is what she
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needs and it may not be forever. She may you know,
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we're never going to say she can't ever walk and
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that's our end goal, Like we would love for her to,
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you know, take a few independent steps. But I don't
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feel as guilty of her being in a wheelchair that
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I did when they first told us that's the route
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that we needed to go.
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You know, you're using the word guilty. I'm going to say,
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I have so much. I know it's and you know what,
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you have nothing to be guilty about. I know, but
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it is an amazing thing. The mom guilty. Yes, it's
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very marry child. That's why everything going on right now
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with a Secretary of Health that doesn't know what the
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hell he's talking about, and now turning around about Thailand
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all why because I know President couldn't figure out how
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to say.
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To even say it. Oh god, let's.
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Just go with Meanwhile, Yeah, let's face it. Tailan All
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is what they give you when they're not going to
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give you anything exactly.
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Tilan Al is the bare minimum exactly they gave me
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when I broke my wrists, Like, what is that going to.
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Do for me, Thank you very much. Do I stick
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those in my ears so I don't hear what stream exactly?
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You know, this is the really tough part of trying
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to advocate in a world right now that is not
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hearing anything but their own voices. Yes, the guy comes
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out and says, well, you know, there really isn't any
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research that backed up what I said, but it's just
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what I think. Tell me what you.
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See exactly exactly. And it's so this is where I
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have to put my mom hat with my kids, but
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I also have to teach my sons too. Your voice
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is not any better just because you're a boy than
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it is mine, or your sisters, or your dad's better
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than me. It boils down in my feelings perspective that
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it's not really they just don't really care about women's bodies,
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health whatever. The one thing that women can take safely
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during pregnancy is tilan all. And now you're telling us
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don't do what you're gonna harm your child. And I,
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you know, I hate to say it, but I didn't
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take Tyler all when I was pregnant with Ila because
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I already had so much guilt with her. Oh my gosh,
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what could I have done differently to not make her
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have all of these inuteral issues. So I didn't even
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take title on all, and she is as autistic as
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they come. And then my other two boys, Yeah, I
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took title and all because I was like, well, shoo,
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I'm gonna take it. I don't feel good is that,
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especially with nax. I already had two kids and I
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was older. I was like, I'm gonna take the title
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and I'll go to sleep. And he's as neurotypical as
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they come for a three year old boy. So and
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my husband said the same thing. He's like, there's no
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studies to say, like genetics don't matter to these people
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because autism is just like any other genetic It is inherited.
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How somehow the genes got mixed up. And I always
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tease my husband look in the mirror, and he's like,
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you're right.
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I am again that mom guilt stuff. Now we carry them,
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we put on ourselves. Meanwhile, here you are advocating at
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the top of your lungs. What is that advocation for?
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ISLA taught you not only about yourself and being a mom,
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but the system that we're trapped in right now.
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It has taught me that I am much stronger than
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I have ever given myself credit for. I always thought like, oh,
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I'll always say something if I need to. But it
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wasn't until I had children. Even Decklan, you know, he
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had a penat allergy, so I taught him, like, you
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have to advocate for yourself because I'm not always going
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to be there to like tell people you have a
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pena allergy. But it wasn't until this I had Isla
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and this election cycle that I was like, I need
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my voice to be heard because I cannot let the
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system fail her. I can't fail her. And so I
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really started like putting myself out there. I was posting
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on Facebook all the time, to the point where I
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have lost so many friends on Facebook because I probably
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annoyed them because I was just I cannot let this go.
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You may have never met a child like my daughter,
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but there are children like her in the world, and
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there are going to be thousands more like her after her,
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And if I don't say anything, then I am doing
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a huge disservice to her and all of the families
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behind me, because they may not have that inner strength
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to be like, Okay, I need to do this because
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a lot of the time, like we talked about, you
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have that mom guilt, so a lot of the time
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you hold that in and you don't want to tell
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anyone that you're feeling this kind of way and that
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you need to But that's when you need to speak
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up the most, because the louder you are, the more
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people will start to hear you. When we moved here,
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we had some issues with the school and I was like, no,
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