What If Your Child Lived in Pain Every Day? Harper’s Story

A kid can be shy in person, bold on stage, obsessed with Elsa, and still be carrying pain most adults couldn’t tolerate. Harper is almost three, and she lives with CM-AVM syndrome caused by a RASA1 gene mutation, a rare vascular malformation that can affect blood vessels throughout the body. We’re Amanda and Stephanie, and we’re joined by Harper’s mom, Michaela, to tell the story behind the smiles: the NICU days, the moment a “rash” didn’t change, and the year-long path to a diagnosis that arrived with a room full of specialists and a whole new vocabulary. 

Michaela breaks down what capillary malformation arteriovenous malformation can look like day to day, including swelling, bleeding, shortness of breath, and constant pain in multiple spots. We talk honestly about the fear of what could happen if AVMs spread to the brain or spine, and what it does to a family when local care turns into “there’s no treatment.” That frustration pushes Michaela into the role so many rare disease parents know too well: becoming the researcher, the coordinator, and the advocate. 

Then the story shifts to a lifeline overseas: Dr. Colletti in Italy and the MESP treatment approach, plus the reality of raising tens of thousands of dollars to access it. We also get into faith, community support, and why families are pushing hard for FDA approval so parents won’t have to leave the country for relief. If Harper’s story moves you, please subscribe, share this episode with one person, and leave a review so more families living with rare conditions feel seen.  CM-AVM Syndrome
RASA1 Gene Mutation
Rare Disease Awareness
Pediatric Vascular Malformation
Medical Advocacy
FDA Approval for Rare Disease Treatment
Special Needs Parenting
Chronic Pain in Children
Healthcare Access
Rare Disease Family Story

Transcript

Meet Harper And Her Joy

SPEAKER_02 0:28

Welcome to Unfiltered Troubles. I am Amanda. I'm Stephanie, and we are joined by Michaela today. Today we are honored to share the story of Harper and her mom, Michaela. Harper lives with CMAVM syndrome caused by a RASA1 gene mutation. This episode's about faith, resilience, awareness, and hope. Okay, so we're gonna meet Harper.

SPEAKER_01 1:02

So she's almost three years old now, and she's gonna be a big girl. Yeah, she's uh that's so sweet. That's a fun age. Terrible threes are real. We have found all the tantrums.

SPEAKER_00 1:15

Yeah. I call them horrific threes. Yeah. Harper. Okay, so so tell us a little bit about Harper.

SPEAKER_01 1:25

Harper signed up in and she's been doing really well. She just had her first dance recital, and she's a little shy at the start of the dance, and then it just crushed the last half of the dance. And then her favorite color is pink. She's obsessed with Elsa and Anna. We have to sing Let It Go every day, multiple times a day. And she loves Goofy. Yeah.

SPEAKER_03 1:46

I remember those stages with my daughter. She loved Elsa and Anna. Oh my goodness. Her dad.

SPEAKER_01 1:52

What make what makes her laugh? She'll say, Tickle me. And she wants tickled underneath her chin. She really thinks it's funny when Callie, our dog, is like chasing anything or chasing her around the house. She loves that. And she really thinks like birds outside right now are funny. I don't know why, but it's big right now. Yes. I love that. Such innocence right there. So besides, I mean what makes her unique just like the her ability to remember things is just insane to us. Like I know kids are like a sponge, but she we will tell her something one time, or she'll just hear it in passing, and she will remember it. It's like locked in there. It's just crazy to us how much she can remember. And so I feel like that even we started looking into a school for her that's nearby, and even they were like, she has like so much comprehension. So I think it's just her memory is just walks. That's really good. It's amazing. My goodness. What is your favorite memory? She we took her to Disney when was that last year, I guess, now, and she got to meet him, and she was giving him a big hug, and she just like obsessed with that moment. And she got to meet Elson Anna. So, like that was just like the highlight because she was old enough to be like, oh my goodness, like these are my favorite people, and hug them because she's really shy. So it I wasn't sure how it was gonna go.

SPEAKER_02 3:25

And she wanted to give him hugs and high fives, and I got a picture and video, and it was just so sweet. I think that's really cool when like a kid gets to meet like a cartoon character in real life, like it just makes it so real and magical.

SPEAKER_03 3:40

And their reactions are always just so adorable and genuine, yes, so awesome.

SPEAKER_02 3:46

Yes. What would I bet it was what would surprise people about Harper?

SPEAKER_01 3:54

Well, when it's me and her and I'm recording her video, she's pretty outgoing and she's very smiley. But when it comes to like meeting her in person, she's really shy. It takes her a second to warm up the people, especially men. She's really shy, but that's even funnier because her dad and her grandpa are her favorite people. But if you're a dude, she's gonna side-eye you for a second before she warms up.

SPEAKER_02 4:19

Yeah, I g I think most little girls can be that way because men kind of sometimes are intimidating. Yeah. So, you know, your dad and your grandpa are like your safe place. And so when an outsider, you know, you're meeting somebody, it's kind of like, oh, like I gotta get to know this person first. Like that sometimes. Yes. Okay.

What CM-AVM Means In Real Life

SPEAKER_02 4:44

C M A V M stands. Oh, wait. I'm gonna ask you how to pronounce it properly. What does it stand for? And would you tell us a little bit about the facts on it?

SPEAKER_01 4:56

An arter veneous malformation. And basically, Harper's every gene of Harper's body is affected by this. When it spreads and if it spreads, we don't know. It's a bunch of tangled vessels throughout her body, and it's sending a bunch of blood flows to that area, basically just dumping into the veins. There's nothing to like stop it like normal people have. So all that pressure and swelling is just going directly into those areas, and then it's making her heart work a lot harder because of all of the blood flow that's going to so many different areas of her body to try and keep that pressure going in. And so on her bottom, where she has the biggest ABM, it has a very big size difference. So her left size is about almost two times bigger than her right side, and so and it does unfortunately wrap around the front, and so she has a hard time like sitting for long periods of time because of all that pressure and swelling, and she has a lot of bleeding in the area. So, you know, it can spread to her brain and her spine was the biggest concern in her possibly having early heart failure because of all the pressure going into those areas with the blood flow.

SPEAKER_02 6:09

Well, yeah, because that's a lot for the heart to be pumping like that at such a young, especially a young age. And so if it was to spread to her brain, what does that cause in the brain? Like more like a clot or an aneurysm type thing.

SPEAKER_01 6:30

Which could it depends on what level it's at with the brain, but that could mean like her having to learn how to walk, talk again. It could cause a stroke, it could cause a lot of different things for her. We're really hoping that doesn't happen. There's just no way for us to know if that will happen, when it would happen. And you see a lot of people with AVMs that go to the brain, and a lot of them have to relearn basically life again if it's not caught immediately and fixed.

SPEAKER_02 7:00

So that is definitely why this procedure you were wanting to have done is so important.

SPEAKER_01 7:06

It sounds like it's the pain that she has in her spots now, because she has multiple spots all throughout her body, and we're treating about four spots that we know of right now: the one on her bottom, the two on her arm, and one on her face. Now, the big thing with this that you know, a lot of people that are going to Italy for this treatment, theirs are localized. Harper's is throughout her body, so we can go and get this treatment done, and then hers can spread still. There's no a hundred percent treatment for Harper, but this will allow her to live without pain and allow her heart to hopefully take a break because it's not gonna be pumping to so many areas that we're hoping. So that's the goal.

SPEAKER_02 7:50

Yeah. Okay.

From NICU Worries To A Diagnosis

SPEAKER_02 7:52

So a question I have is when did you first learn something wasn't right?

SPEAKER_01 7:59

And she had to spend some time in the NICU due to some breathing issues, some eating issues. She was her heart was not at night. She would have bradycardia. And so while we were in there, she had a you know, babies are like red and purple when they're born, so it's like kind of hard to see like what's actually gonna be on them when they're first born. But after a few days in there, I started noticing like her autumn was really red on one side. And they at first thought it was a diaper rash, like a really bad diaper rash. And they were so kind, they kept, you know, trying to get us different creams and different diapers, and we were trying all the things, and I noticed that the what we thought was a rash, the outline wasn't changing. And so if it's a diaper rash, it's gonna change, you know, it's gonna have different spots that kind of appear and go away. But this one wasn't changing, and so I kind of started questioning if it was a diaper rash, and that's when a nurse that actually had a port wine stand on her face came in and said, Hey, I think she actually has a port wine stand, which is pretty common. And I thought that was kind of just the extent of it, that maybe it was just like a birthmark, and that was gonna be the end. But then we went to a dermatologist in Columbia, and that's kind of when the process started for us.

SPEAKER_02 9:19

Okay, so about how long did that first how long did it take before you got a diagnosis?

SPEAKER_01 9:28

About a year old. She was almost turning a year old when we got the first initial diagnosis. Yeah, and that was because, you know, we had to see a dermatologist in Columbia, and then we were referred, he kind of looked at it and was like, it's not something that I think is like a normal Port Weinstein. I think you need to be sent to a larger hospital in St. Louis at Washington U, is where we went. And, you know, it takes so long to get an appointment. And then we get there and we're kind of just expecting to talk about like laser treatments. And then we get there and we're filled with a room of 10 doctors, and they're telling us, hey, there she actually has this rare syndrome, and it can spread, and it it's all these things, and we need to do a genetic test. And so then we have to wait for a genetic test, and then John and I have to get tested, and it came out that John and I did not carry the gene. It was just a very small percentage that Harper ran and we got this gene. And so after all the testing and waiting, it took almost a year. I can imagine going through all of that.

SPEAKER_02 10:32

What was it like in that moment with all those doctors? What was that moment like for you and your husband?

SPEAKER_01 10:42

We were so we just we didn't expect anything negative to come from it. We just thought we're gonna talk about laser treatments and how, you know, maybe it'll be a little uncomfortable for her after these treatments, and then being told that this little tiny baby has this rare syndrome that could affect her for the rest of her life. They're throwing all these terminologies around and we trying to process this, but we don't even know what questions to ask. We don't know like how to answer or ask any questions. It was just so much to take in, and I I describe it as like I felt like I literally blacked out. Like I just couldn't comprehend what was happening in that moment, and then you get in the car and of course you start Googling, and it's just horrible all the way around.

SPEAKER_03 11:33

Oh yeah. The dang Google will get you every time. Absolutely. What emotions did you feel as a mother and father after you guys got the diagnosis? Okay.

SPEAKER_01 11:44

Just kind of hopeless in that moment. It wasn't a there was just so many, it was, you know, uncertainty. I can't speak with that word. It was like sadness, it was kind of anger in the moment of what do you mean? Like what is happening? Just a lot of for me, it was just a lot of hopelessness. And for my husband, I know like his stress just like went through the roof because we just didn't know how to even move forward with it when it's something we had never heard of.

SPEAKER_02 12:13

Yeah. Yeah. That's gotta be the hardest part about it is not knowing anything about the diagnosis and having to learn everything.

Daily Pain And Family Life Changes

SPEAKER_02 12:22

Yeah. So living with it, what does a normal day look like for Harper?

SPEAKER_01 12:29

Possible. She plays, she runs, she does all the things. But we do notice like when she is running, she does get out of breath a lot faster than most kids. And it's not like asthma. I think it's just because of how her her heart is normal working. And then she'll randomly just stop us and then be like, you know, this spot hurts. She's like, Mommy, it hurts, it hurts really bad. And she'll kind of tell us which spot is hurting her. And then a lot of times when she's going to the bathroom, she has a lot of blood that's coming out because of all that blood flow to that area, which can cause, you know, her to have like low iron and things. So that's like a that's how normally the baby goes.

SPEAKER_02 13:12

Okay, and what challenges daily does Harper face?

SPEAKER_01 13:19

In areas like with her bottom, you know, like there's just so much that's going to that area that it's just not normal for her to not feel pain. So she doesn't really know anything different. But, you know, as a kid, like it would just be nice for her to not have to know what that pain is every single day. Hers is just a daily pain and the pressure that she's having to send to those areas. I can't imagine how she feels as a little baby, but I know for an adult, you know, if we had something that was bothering us, like we would probably be complaining all day. She just, you know, acts like it's nothing because she's so used to it. Yes. Yeah.

SPEAKER_02 14:01

She keeps it positive.

SPEAKER_01 14:03

Yeah.

SPEAKER_02 14:04

That's all she knows. Yeah. I mean, honestly, if she's had it, this is all she knows.

SPEAKER_03 14:10

So Which does not sound Yeah.

SPEAKER_02 14:14

How has this impacted your family life, like overall?

SPEAKER_01 14:19

Appointments, a lot of different talking to different doctors, learning different specialists. I actually worked before Harper's diagnosis. I worked at a company that I really loved and I loved my job. And then once we got her official diagnosis, I knew that it was probably gonna be something that was gonna take up a lot of my time. Because at that point I was already missing work constantly because, you know, she would have to be out of daycare for like two weeks because she would have some kind of procedure coming up and they didn't want her to get sick, and we would have to stay home. I would have to stay home with her. And so it came to a point where I was like, do I keep trying to juggle everything and not giving my all at my work where a manager and people need me, or do I just decide to stay home? And we just decided it was time for me to stay home because it was just so chaotic to try and juggle everything that we stayed home. So I mean, my husband took on, you know, that responsibility of being the sole provider and working overtime and taking as much overtime as he could to make sure that we were saving for if something ever did come up where we could find a treatment for her. We just never expected it to be in Italy and cost so much. But so yeah.

SPEAKER_03 15:39

Yeah. Okay. So what has been the hardest part for you as a mother?

SPEAKER_01 15:47

Here in the US and not being able to just fix it, you know, not being able to just go a couple hours away and have somebody fix this for her. And it was hard to just do so much research at first and not have any answers for such a long period of time. So I think for me it was just that that very like helpless feeling of like my daughter's gonna live with this thing every single day of her life and I can't do anything about it.

SPEAKER_03 16:14

Yeah, that would have to be very rough knowing that like I was really there's nothing immediately you can do. Yeah. Oh yeah.

Fundraising When You Can’t See It

SPEAKER_03 16:20

Have there been moments you wanted to give up?

SPEAKER_01 16:24

Getting like the GoFundMe together. The GoFundMe and trying to reach out to people and do all the things has been, you know, sometimes discouraging just because people can't see Harper syndrome. And so they like it's hard for them to connect emotionally with it. And so it took a really long time for people to start sharing her story and start trying to, you know, get the donations rolling in. So that for me was really hard because I wanted the world to see my baby, and it was hard trying to get them to see what I see.

SPEAKER_02 17:02

Yeah, social media is like it it just takes a while, but consistency and you're super consistent. And sometimes I try to grow mine too, and it's like I get defeated, and so I just can't imagine. I'm like, oh my gosh, 20 views on this video or five likes, it makes you feel so discouraged. But I do know if you just keep going, keep posting, keep doing it, and it'll grow. And it's gonna take one video, just one video. I'm really hoping so. And that one video can change everything.

SPEAKER_01 17:37

For so, what keeps you going? The world. Like now that we know that there's this treatment in Italy, there's no way I would stop. There's literally no chance that I would give up on raising the money for her. It's out there, I just have to raise it to get there. And so for me as a mom, as anybody that's a mom would know or a parent, you're gonna move mountains for your kid. And so there's no option for us to give up. 100%.

SPEAKER_03 18:08

Absolutely. I love that because there really isn't as a parent, you just want the best for them, and you're gonna do everything you have to do to do it.

SPEAKER_02 18:15

Yes, I agree. So, on your medical journey, how many specialists have you seen so far? That's a lot, yeah. And and I'm sure in that, like it's been so frustrating. Every time you see a specialist, there's no treatment. There's no treatment. And that has to start feeling very a defeat, you know.

SPEAKER_01 18:40

Here in Missouri, I think there's just a lack of knowledge on this rare syndrome because it was so rare. And some of these doctors, I don't feel like it was a lack of them caring. I think it was just they really truly didn't know what to do and what to offer because we weren't offered anything. It was just like, yeah, she's gonna deal with this daily pain. It's gonna get worse as she gets older. Good luck. And I felt really frustrated by that because I couldn't believe that there was no follow-ups with us to help us.

SPEAKER_03 19:13

That that would be very infuriating as a parent to be like, Well, good book.

SPEAKER_02 19:18

Yeah, you're like, go out the door, here you go. Yeah.

Finding Dr. Colletti In Italy

SPEAKER_02 19:22

So basically, you had to become your own medical researcher.

SPEAKER_01 19:28

Hours and hours on the internet searching. And that's originally how I found Dr. Colletti in Italy and was just researching online. And at first, when I saw him pop up, I thought to myself, well, there's no way I would ever be able to get to a doctor in Italy. Like, how would I even set that up? Like, I don't know how to do any of this. I can't even figure out how to read the website. Yes. So, can you tell us a little bit about Dr. Claudie? Met with him, which it was a video consultation. We could tell right off the bat he was different than anybody that we had met with. He was so kind, so caring, so detailed. He had looked at all of her MRIs. He knew exactly what the plan was going to be. And he let us know like, we're a team, we're in this together. You guys are not gonna be doing this alone. And he is the one that came up with this treatment, this specialized treatment mess. He's the brain behind it all. And so he's been doing it for several several years now. Um, I think it's been about five years that he's actually been doing this procedure. It's just getting really popular now with people in the United States now that we're finding out about it, because he comes to a super clinic in New York every October, which we will be flying to as well. And that's how people are starting to really understand like how life-changing this is. And so it's not just me trying to get to Italy. I mean, I have probably 10 or so people that have reached out that are trying to raise the funds to get to Italy too.

SPEAKER_02 21:11

Okay, so as far as raising the funds to see Dr. like the first initial shock of the price, how did that feel?

SPEAKER_00 21:26

I don't know what I was expecting.

SPEAKER_01 21:28

I knew it was gonna be a lot just because he had talked to two other families that had been to Italy already. I think it was just, you know, getting that finalized here it is, and this is what you need to pay two weeks before the treatment was just really set in. And we're kind of at that point where the $85,000 Billy is not giving us any wiggle room. If you see a lot of these other families, they're raising a hundred thousand dollars or more. So I am a little nervous about that, but I was also just nervous to raise any money, like I didn't know. If anyone was gonna donate to us. I thought I was just so nervous. Absolutely. Yeah.

SPEAKER_02 22:06

Yeah. I'm sure and I hope and pray that you end up exceeding what you need. Because I see that all the time with GoFundMe's people end up exceeding what they need. So I would hope that that's what happens for you guys as well.

SPEAKER_03 22:22

Yeah. Cause I mean that'd be a big blessing.

SPEAKER_01 22:24

It'd be nice just to have a little room in case she needs a longer hospital stay than we're expecting, because just one night in the hospital is 18,000. So if she needs any more than we're expecting, then that's right out the gate.

SPEAKER_00 22:46

Yeah. Yeah. Okay.

How MESP Treatment Works

SPEAKER_00 22:49

What is the mess treatment?

SPEAKER_01 22:53

And basically what that means is there's a medicine that's offered here in the United States with a lot of kids that have aviums or even sometimes cancer patients called bliomyosin. That bliomyosin here in the U.S. is injected in these children multiple times throughout their life. It's a lifelong treatment. I mean it's about every three months. The problem is it's not actually going down deep enough. So all it's doing is managing symptoms here in the US. In Italy, they took this device that Dr. Coletti invented, and it's taking little needles that has electric shock wave, and they're putting the bliomyosin in first, and then they're taking that electrical pulse with those needles, and then they're doing that after the medicine's injected, and that allows it to go deeper into those vessels that are tangled to help kind of cut those off where they're not gonna have all that pressure.

SPEAKER_02 23:48

So it'll essentially like so if it's tangled, it'll essentially just open them up.

SPEAKER_01 23:54

Be with kind of yeah, killed off is like a nice way to put that. And then that way all that swelling and pressure should go away. Okay. Let's see.

SPEAKER_02 24:06

What are your hopes for her treatment?

SPEAKER_01 24:10

We don't want her to live with daily pain for the rest of her life, and we know it would get worse as time goes on, so that's our main goal. And then as well to have her bottom where it's that huge size difference, we want it to have less of a size difference or not be complete or really just be completely gone where it doesn't have any kind of size difference, just because when she's older, we don't want her to feel embarrassed when she's like wearing swimsuits and stuff like that.

SPEAKER_00 24:37

That was always a concern of mine is I want her to feel confident. Yeah. Yeah. Absolutely. Yeah, you want your babies to be confident. Yeah. Yeah.

Faith Community And Staying Hopeful

SPEAKER_03 24:53

So how has faith helped you?

SPEAKER_01 24:58

As a throughout adulthood, and so recently I hadn't been, I kind of have was making excuses on why we couldn't make it to church. And you know, with two kids around here, I had a really small church that didn't really have like a kids program, and so I was kind of putting it off. And then it's been several months ago now that I said, okay, like I think it's time that I need to get back into church, you know, like I'm feeling the nudge. I'm I know I'm overwhelmed and stressed, and I need the help. And so I need to find a church that feels good for us, that has a kids program, that I can feel, you know, just like home walking into. And so I found a church and immediately it was just like this sense of relief of okay, like I have this like sense of community around me that I've been missing, that I've been putting off, and now my kids can experience what I experienced growing up. And it just felt like a little bit of a relief to have that and not just be at home and praying like I can actually go somewhere and be surrounded by people that are wanting the same thing as me.

SPEAKER_00 26:12

Yes, yeah, absolutely. Yeah, I agree. What keeps you hopeful?

SPEAKER_01 26:25

And what the treatment did for her, and I've been in close contact with her mom this whole time. And just seeing that made such a difference to us, where we were like, you know, if she is living this of so much better quality of life now, that's what gives us hope is we know this works. We've met two families now that have had the treatment done, and so we are just ready for it.

SPEAKER_03 26:52

That's exciting. That is yeah. You've gotten you've your little community that you found, which is nice because sometimes you Yes, yeah, it's been a blessing.

SPEAKER_02 27:01

Somebody that understands what you're going through.

SPEAKER_03 27:04

Yes. So I bet.

Pushing For FDA Approval In The US

SPEAKER_03 27:06

What message would you give to another parent that's going through this?

SPEAKER_01 27:12

Gnosis and I couldn't find anything here in the US. It it does make you feel really defeated. But now we have a treatment and it is going to be coming to the US. It's just not now. It's gonna take a few years. We're gonna have to get FDA approvals. But all of us families are pushing for it. And so if you're a new parent and you're just now hearing this diagnosis, know that you have families like me that are pushing all of our state representatives hard to get this approved faster because parents shouldn't have to travel to Italy and spend a hundred thousand dollars, take out a second mortgage, lose a retirement, whatever it might be to get their child the treatment. So just know that there's parents like me that are working hard behind the scenes that are doing everything as they can to make sure that we are taking care of them.

SPEAKER_00 28:09

I love that.

SPEAKER_02 28:10

I love that you guys are doing that because uh I do feel our medical system, there's so many treatments for all kinds of things that are overseas that we don't have here, and it does force a lot of parents, even like with cancer treatments or just there's all kinds of things. And it's really frustrating that we don't have that kind of stuff here. Like we're supposed to be advanced, but a lot of other countries are more advanced in medical than we are. I feel like we're way behind.

SPEAKER_01 28:42

A lot of things, and it is frustrating because like when when we found out that MESP is out there for so many years now, we were like, wow, like why hasn't this came to the US? Like he's had so much success in Europe with the his patients, and he's been trying to get to the US.

SPEAKER_00 28:59

So, like, why is it taking this long? Yeah.

SPEAKER_03 29:09

I feel like there's hoops that have to be, you know, they have to jump through, which doesn't make any sense on why there's so many. Mm-hmm.

SPEAKER_02 29:16

I swear I seen a movie and I don't remember what the movie was, but this little girl or a little boy had to go overseas to get some kind of treatment. I forget what it was because maybe it was a man I I don't remember, but they ended up fighting to try to get this machine over here. And like just in the movie alone, like the hoops they had to jump through was insane.

SPEAKER_01 29:42

Two, not even just the US family in Canada that just got back from Italy. Their daughter has the exact gene mutation as Harper. So we've FaceTimed them a lot and talked with them, and they have Canada has a grant that is for families that have to travel out of the country for medical needs, but they were denied in Canada, even though, yeah, and so they're fighting, they're pushing, they have a petition, and it was on a global news channel last night because it's not just them, it's several families that Canada is denying this medical grant funding. Wow.

SPEAKER_02 30:22

That's not good. I mean, if you have the funding, you should give it, you know.

SPEAKER_03 30:26

If it's in place, then they should be able to absolutely give it to the child.

Rapid Fire And Harper’s Future

SPEAKER_02 30:31

Okay, I'm gonna do some fun. I call it my rapid fire round.

SPEAKER_00 30:38

One word for Harper. Rag, I love it. I love it. Favorite food. A song that reminds you of her. I love it. That's so sweet. Something that always makes her laugh. And one thing you want people to know about CM AVM.

SPEAKER_01 31:16

It's the long condition that can affect so many different things of their life, and it's hard, but just because you can't see it doesn't mean it's not important.

SPEAKER_00 31:35

Absolutely. That is 100%.

SPEAKER_03 31:37

So here are some of our final questions for you. What do you hope Harper's future will look like?

SPEAKER_01 31:45

She doesn't have to spend all of this time in hospitals and having random treatments, and that she can just live a normal life, and that when the time comes that sh if she decides that she wants children of her own, she has a very high chance of passing G on to her children. So I'm hoping by that time that the US is more advanced for this treatment and that she won't have to worry for her own children, and that's not a deciding factor for her if she decides to have children. I would just want her to live a normal round.

SPEAKER_03 32:17

If Harper hears this episode, say in 20 years, what do you want her to know?

SPEAKER_01 32:24

Got this done for her that I took no breaks because she is a hundred and fifty thousand percent worth it, and I would do it all over again. Yes.

SPEAKER_03 32:37

Yes as moms, we do. Yes, we fight till the end for our babe and we love you're in a zillion. Yes, absolutely.

How To Help And Upcoming Fundraisers

SPEAKER_03 32:45

What can listeners do today to help?

SPEAKER_01 32:53

And we have a TikTok. It's called Michaela Lynn on there. I can share that on our Facebook page as well. And then if they have the funds to donate, we would love to hopefully get to our half-wife point sometime soon. And then if they could just share her story, because sharing her story out has helped us so much because we've been able to meet people like you guys just from people tagging you and you know, and sharing it out and doing all the things, and so you just never know who it's gonna reach by sharing. That's all those things help sex.

SPEAKER_02 33:27

Yeah.

SPEAKER_03 33:28

No, never know.

SPEAKER_02 33:30

Yeah, I love that. And we thank you for trusting us to share her story. To share her story. And then we hope that this episode touches even just one person. You know, I mean, I hope it reaches millions and ever it touches everybody that hears it. And then I do know that you do have some fundraisers or some community things coming up. I do know Hurt Donuts is one of them from Springfield, Missouri. They're gonna be bringing their emergency vehicle. And I believe 100% of Harper's special demand goes to Harper's funds. And I think the rest of the cells is 10% of what they sell, right?

SPEAKER_03 34:16

And then we also seen the Pal and Pearl Boutique is doing from now until July 30th, five dollars on off of all orders is going to Harper. That's amazing. That is really good.

SPEAKER_02 34:31

I love I think what I like most about Missouri is like our community support. So in this state, there is a lot of community support, and it's literally just unmashed.

SPEAKER_01 34:50

So I mean, we're working hard over here.

SPEAKER_00 34:56

Love that. Yeah, we love that.

SPEAKER_02 35:01

We love that. If anybody does want to go to get donuts, it's this Friday at noon 26th, 11 a.m. I'm also going to when I post like all these little clips, I am going to always tag you in them so people have your social medias. They can find you on our page.

SPEAKER_03 35:24

And we'll have them all pinned, all your socials pinned up in them too.

SPEAKER_02 35:29

I already have her GoFundMe pinned on our Unfiltered Trouble Facebook page. So if any of our listeners want to head on over there, you are more than welcome to do that. Yes. We would love for you to do that. Yes. So is there anything else you want to say, Michaela?

SPEAKER_01 35:48

Me before this. So I appreciate you just letting me come on your platform and share our story. It means a lot to me that anyone takes their time to get to know us and hear Harper's story. It means everything to us. And I hope the listeners get to know Harper a little more because she's so deserving. So I appreciate it. Yes.

SPEAKER_02 36:06

Thank you. She is very deserved deserving. And we will be keeping her in our prayers and sonnets. And hopefully, we wanted to be able to come do this in person live. Yes. But my daughter's in softball. So it just this coming weekend, we have a lot going on. So I was like, we're just gonna have to do a virtual. And me and her hope that we can come up there and meet you guys. Yes, in person, because this time before the end of summer, because it just makes it so much real for us.

SPEAKER_00 36:36

Yes.

SPEAKER_02 36:40

Yes. Yes.

Final Words And Sign-Off

SPEAKER_02 36:42

Okay, so you're one mama, one fight, one hope for healing.

SPEAKER_03 36:47

Until next time, stay unfiltered.

SPEAKER_00 36:53

Okay, bye.