Unbreakable Bonds of a Rare Mom

Imagine shouldering the weight of chronic illness while your partner is deployed, leaving you to single-handedly care for children who also navigate their own health complexities. Welcome back Kenzie, the Rare Mom, as we delve into her raw and hopeful narrative of managing mixed connective tissue disease and a blood coagulation defect. As she courageously steps into the role of both mother and medical student, Kenzie unveils the intense reality of parenthood under such unique pressures—chronicling migraines, prolonged bleeding, and the emotional toll it takes. Her journey is a stark reminder of the resilience required to face each day with grace and strength.

Kenzie's love for her son Josiah is a powerful force that shines through the darkest challenges. She opens up about his battle with Familial Cold Autoinflammatory Syndrome and the strikingly sweet yet fiercely independent nature that defines his young spirit. The candid reflections on the paradoxical joys and trials of raising a child with a rare genetic condition, paired with the weighty decisions around family expansion, captivate us with their depth and honesty. Witness the profound growth and resilience Kenzie has fostered throughout her odyssey, a journey marked by love, adversity, and the fierce determination to provide the best for her family.

The heart of this episode beats to the rhythm of advocacy, as Kenzie transitions from law and order aspirations to her pursuit of a nursing career specialized in rheumatology. Her son's health crises and the arduous path to diagnosis illuminate the crucial need for competent and compassionate healthcare providers. We also venture into the broader societal landscape, discussing the judgments and misunderstandings many parents of children with rare diseases and autism encounter. Kenzie's story is an open invitation for connection, support, and resource-sharing, echoing the sentiment that no one facing these trials should walk alone. Join us in a conversation that not only touches the heart but also calls for action and empathy.

https://www.gofundme.com/f/cabrera-family-medical-funds?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

Makenzie Cabrera (@kenzi.c_) • Instagram photos and videos

https://westchester.news12.com/orange-county-native-raises-awareness-of-familial-cold-autoinflammatory-syndrome-after-toddlers-diagnosis

https://www.tiktok.com/@cabrerafam1?is_from_webapp=1&sender_device=pc

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Transcript

Jen: 0:42

Hi, my spoony sisters. It's me, gracefully, jen, and guess who I have in the house. Welcome to Kenzie, the Rare Mom. You've heard from her before. I had to bring her back. We're going to talk more about her. We're going to talk more about Josiah. Welcome, kenzie. Hey, all right, how are you doing, girl?

Kenzie: 1:09

It's been a whirlwind since we talked last. Just going through the motions, you know, as a chronically ill adult with a chronically ill child, I feel like things change in the matter of hours or even minutes. So we have a lot to catch up on.

Jen: 1:24

We sure do and, like I told her before we started the recording, let's consider this therapy. So if any of my spoony sisters just need some great therapy to talk about your stuff, just you know, reach out to me and we'll have an episode and we'll talk it out. I'm not a therapist, please understand that. Okay, so as we talked, you know, we gave a little bit of your background, we gave a little bit of Josiah's background, but let's kind of start with okay, let's remind people what are your diagnoses.

Kenzie: 2:01

So at 13, I was diagnosed with juvenile idiopathic arthritis. I just recently got a new diagnosis of mixed connective tissue disease which I found out from my rheumatologist can escalate to like RA or lupus or all those good fun other diseases. And then I have a blood coagulation defect disorder. So that's a mouthful.

Jen: 2:28

And you've been dealing with some current health struggles, so where do we even dive into that?

Kenzie: 2:39

So everybody knows when you have a autoimmune disease it flares with stress and sickness and children or jobs. And my husband actually just left to the military six weeks ago, so that was a major change. Plus, my kids also have their own health ailments and there's been winter break so I'm completely stressed. So I've been dealing with migraines and extra bleeding and constant flares and lovely magnitude of health issues.

Jen: 3:16

And school on top of that all.

Kenzie: 3:19

Oh yeah, you can't forget about school, right? I mean God, I wish it was over with already.

Jen: 3:26

Yeah, I know I want that for you. I just want you to be done because, well, first of all, I'm excited because you're going to the medical field, which I think is amazing, and you're going to do big and wonderful things and I can't wait to see. But yeah it's got to be absolutely exhausting going through medical school, being kind of the single mom right now, taking care of yourself, taking care of your children. We both have complex things going on. How the heck are you holding yourself together right now?

Kenzie: 3:58

Well, for starters I had to really take a break. I put my phone down the last couple of weeks and I just I felt like I was just checked out, I was just over it, I was drained, I was just defeated and I hate saying that, but sometimes you just need to shut out the world. I was still kind of active, liking, reposting, but my normal stuff I stopped doing for a couple of weeks. I went back to therapy. I tried to talk normal therapy and they said that was not going to work for me because health care people are the worst patients. They don't want to talk about anything and they're sovereign. No can be. So I started. I started the ED, edmr, I believe, therapy and it is called rapid eye movement therapy.

Jen: 4:54

Walk us through what that looks like I.

Kenzie: 4:58

Don't even know, because I feel like I try to black out, because it's kind of dramatic. I mean, for me anyways, I have a lot of deep rooted childhood trauma but you sit there what a therapist. And they try to Rebring up your thoughts and reprocess it and you just learn new ways to cope, while you're like moving your eyes with a pendulum and it's I Mean, it depends the person it's kind of like weird. I didn't know what to do the first time and then it kind of brings up like vivid night terrors. For me anyway, it's a bad, it's for me it's horrible, but I can tell that it's working. I'm in my third week and the nightmares are like kind of like reprocessing the things that I want through growing up and like the trust issues with my husband, because everybody has them in marriage. Like if you don't have them, then you're lying and I'm just learning how to cope better. I can see a difference, even though it's terrible, wow but you're so brave.

Jen: 6:04

I Just hearing you talk about it. It scares me to death. I mean, what kind of things am I not processed that? Maybe I need to or maybe I don't want to.

Kenzie: 6:18

Okay, it took a lot, yeah, so.

Jen: 6:22

So, on top of that, all you also are having some bleeding concerns right now. So what does that look like?

Kenzie: 6:32

Well, it's mostly girls who listen to us, so TMI. But With my blood disorder I'm also a gene carrier for thalassemia, which my older son has, so I'm prone to like longer periods. I'm prone to bleeding faster, longer times, like gum bleeding, even when you're brushing light or like nosebleeds. So I've had my period for 32 days, yeah.

Jen: 7:01

So that's, that's absolutely terrible. I mean, seven days was enough for me and it was horrible. I you know dealing with endometriosis and all that. I mean it was horrible. So I can't even imagine 30 plus days.

Kenzie: 7:16

Yeah, it's been rough and then like I've been having like really my bad migraines on top of it, and they don't know if it's like hormonal or like the pressure on my head is changing from Something else. So I have to go do a lot of imaging and blood work tomorrow.

Jen: 7:34

Okay, so what kind of doctor are you seeing tomorrow?

Kenzie: 7:38

My hematologist and she's also gonna bring in my gynecologist. Love it Okay.

Jen: 7:44

So are they going to have you see a neurologist because of the migraines?

Kenzie: 7:49

Well, yeah, I see a neurologist right now and lovely insurance.

Jen: 7:53

They are fighting my Botox injections, so yeah, yeah, and I mean I haven't had this done, but for those that are not familiar, they they can do Botox injections in your scalp that help with migraines and I hear that for some people that works wonders.

Kenzie: 8:13

Mmm, it's really hit or miss. For my mom they work great, but for, like, my aunt and my grandma, they did not work good at all. So I'm just like you know. I mean having 11 day migraines or medication don't work. I'm willing to try anything because it's depilitating. I can't drive, I can't take care of my kids the way I should. It's Hustrating.

Jen: 8:36

Are you on cut any kind of rescue meds Right?

Kenzie: 8:41

now I take X-Cedrin migraine. I'm not supposed to because not many people know, but I had the gastric bypass three years ago. With the gastric bypass you're not supposed to take aspirin, a leave ibuprofen, because it's risk of bleeding and then even with a blood disorder, you're not supposed to take this stuff anyways, but that's the only things that really help. I'm maxed out on my Fira set, which is for migraines, but I've been taking that since I was 15 years old. It was time to get off it. It doesn't do anything, so now it's like a waiting game.

Jen: 9:14

Have you ever tried? I think it's called Amatrix.

Kenzie: 9:19

My mom takes that and she actually told me to ask the neurologist. But it's so hard because with the gastric and then my blood disorder and everything, it's like weighing what is safe, what is not safe, they don't know. So they're like scared anything with me because they're like we don't want you to develop ulcers or bleed out and die. I'm like great, I'm just going to suffer forever.

Jen: 9:42

Yeah, I mean that's a really valid concern. I mean, the main reason I asked about that is because a fellow Smini sister and I were talking about migraines today and we both take Amatrix I was talking about and I'm wondering if you ever had this issue. But with some of those rescue migraine medications, a side effect after taking them is, I call them zingers, where you feel like your head is buzzing. It's just the weirdest feeling, and so your head is starting to let the pain go, but now it's zinging.

Kenzie: 10:14

Oh no.

Jen: 10:16

Okay, okay, just me. Yeah, it's a weird feeling, gosh, I wish I could help you. I mean, I'm sure you've heard all the things like ice packs and heat and all the things.

Kenzie: 10:32

Yeah. They recently had me try a medication I don't know if anybody on here has taken it probably so but Symbolta and I had a adverse drug allergy from that. I almost ended up in the hospital. So that was lovely, so yeah.

Jen: 10:54

And that's an anti-depressant right.

Kenzie: 10:57

Yeah, but I found out that they also use it for chronic pain and arthritis at the same time, like fibromyalgia and stuff like that. So they're like maybe you can have like one special type feel. I'm like I don't know, but we'll try, and then yeah, within an hour I was so sick, it was terrible.

Jen: 11:14

That's awful, and I mean there's a lot of medications out there that can kind of help with multiple things, and if it will work for us, great, and if not, that really sucks. But it would be nice if I could find something to help give you some relief.

Jen: 11:30

God knows right, ok so we're going to kind of switch directions. For a second Part of why I wanted to bring you on here is Rare Disease Day is coming up and I really want to share about your son on Rare Disease Day. So I know you briefly talked about him in your last episode, but I really want to like dive in I'm not even really sure the questions to ask you, but can you please tell everyone about you, know what that journey has been like and what you guys are going through?

Kenzie: 12:03

Yeah, josiah will be three in March, so next month. He is a rambunctious topler who I swear he reminds me of a Sour Patch Kid. He will give me a kiss and then choke me out. It's so funny because he's just like the personality's, like there, like you can see his eyes glowing, like he is just over the top, out of control, but in a good way. He's just so funny.

Jen: 12:30

I love him. He's so funny and he reminds me so much of my grandson, because my grandson's the same way. He'll like hit his mom and then be like I love you, mommy. Can I give kisses?

Kenzie: 12:42

It's ridiculous. And the thing is it's like everybody's like oh my god, he's the cutest kid ever, but in real life, if you come up to him he will like growl at you because he does not like new people. So it's like don't be fooled by the cute picture, because my son will like bite your finger off Like he is crazy. I'm so trying not to laugh.

Jen: 13:02

I'm trying. He's still so cute. I just want to hug him and squeeze him.

Kenzie: 13:10

So he has a rare disease called F-Cas, or familial cold auto inflammatory syndrome, and it's like an umbrella for caps and I can't say the first words Like chairopin, I'm pretty sure associated protein syndromes and unfortunately Josiah fits in all three categories. So they didn't know where to place him because his symptoms are so severe and all over the place. But fitting under one. The treatment's still the same, so it really didn't matter. So with this condition right now there's less than 400 people in the world with it.

Kenzie: 13:54

We are the only known people in New York, which makes it harder because nobody really knows how to treat my son. So we're all over the place and trying to think His variant is the NLRP3 gene and it's just so much in my head it's all jumbled, so I'm like trying to get it out correctly Sounds OK, but with this gene it's either they're half mutated or they're fully mutated or there's a little chromosome deletion thing. Well, my son had to be the extra one and have the whole deletion of the gene. I don't understand, but he is special in his own way and he's actually the fourth person in the world with this whole completion, whole deletion of this gene. And my husband also actually carries this full deletion, but has no symptoms. He's just a carrier, so we got lucky.

Jen: 14:54

Wow, OK. So what does this mean for if you were to have future children?

Kenzie: 14:59

So we went to a genetic counselor because that was my main question, because we wanted to have more kids. I always wanted a big family. I wanted like if I could have a hundred kids I would. I love being a mom. My husband thinks I'm crazy, but it is what it is.

Kenzie: 15:13

So we went there and it's a dominant trait, so we have a 50% chance every time that our kids will have this rare disease. So it's really the balls are in our court. Either we can have another kid and pray to God we don't have another Josiah, or we do.

Jen: 15:32

Wow. I mean because obviously you love him and you would never want to replace him, but also, do you want to take chances of of having another kid to care for it? That's dealing with that same thing and now you're getting to see how it's affecting him. So, for lack of a better way of saying it, it's almost like do I want to take the gamble, or what are my other options?

Kenzie: 15:57

Yeah, I mean it's hard because you know I always say that there's worse conditions out there that my son could have. I'm blessed and lucky that Josiah isn't as bad as some other kids out there. I'm lucky. But at the same time my son isn't the normal toddler that's playing and jumping and running and can be outside building a snowman and doing the normal toddler thing. So it's like I get in my feelings. Sometimes I really do. I cry and I'm like, oh my god, like my life is over. And then I just get up and I'm like stop crying, like you're crazy, like you have the best life ever. You are educating yourself and everybody else. Yes, he suffers a little bit, but I do too. We'll make it work.

Jen: 17:35

Well, you know, it's like I tell everyone I come across. You know, the things we go through make us better people, and the things we go through might really freaking suck, but sometimes I feel like I wouldn't change it for the world, because this made me the better person that I am. And I'm almost afraid to say that to people like you, because I don't want to see you struggling and suffering or struggling with taking care of your son and worrying about your son. But at the same time, these things make us who we are and they make us better people too.

Kenzie: 18:08

Yeah, I totally agree. Like before I had kids, I wanted to be in the FBI. I got my criminal justice degree. I wanted to be like a lawyer. I was super cool and confident. And then I had Jace and I was like I think I want to be a nurse. You know, my kid is kind of special needs. He got diagnosed with autism. Like maybe I want to work as, like, maybe like a therapist or something. But then when I had Josiah, that's when it really I found my passion of becoming like a nurse practitioner in rheumatology, because it's needed. There's nothing. There's nothing there and I hate saying that, but since COVID we have some of the most incompetent graduate nurses that I've seen, and that's just. That's just the truth, because they aren't getting the clinical hours, they're not having the same standards and it's. It's sad because we're the ones that are cheated as patients and even my son. So I want to be different and I want to change the perspective of patients and change lives and I think you are.

Jen: 19:14

I think you're gonna be a life changer for sure, and I cannot wait to see you. I sure hope you go under rheumatology, because we need more people like you. We do. We need your brain and yeah, we're all a little crazy. Can you kind of walk us through what his life is like? What is, what is he going through and what is he dealing with?

Kenzie: 19:43

So, josiah, I'll just start from like birth because I feel like it makes more sense. You know mother's intuition I think I said this the last time. Mother's intuition is never wrong. I knew there was something wrong with my son when I was pregnant. I had help syndrome. I had infections after infections.

Kenzie: 20:02

I was actually in the hospital like the last 12 weeks of my pregnancy because I was so sick. Julius found me unresponsive in the bathtub turning purple and he rushed me to the ER and my kidneys and liver and everything was just so inflamed and not doing well. So I went through like 13 to 15 antibiotics. It was horrible. And then Josiah was born at 36 weeks because his heart rate was over 300. He had fetal tachycardia syndrome. So, yeah, he was born. He wasn't breathing. It took him a little bit to get him breathing, which sometimes is normal with a C-section. And then we found out he was severely jaundiced and then he got like a rash all over his body, which is not normal, and actually one of the first signs of CAPS or F-CAS is a full body rash. Ever. They were just like he's jaundiced, it's okay, I'm like no, definitely not. So by 11 days old we were rushed to the children's hospital about two hours away. He was having seizures and they thought he had meningitis. So he was on so many different antibiotics and that's when I found out he was allergic to Keflux and penicillins. So love that for him, yeah. And then he was fine technically because all the infections ended up going away. So they discharged us after about a month at the pediatric ICU.

Kenzie: 21:35

It was a long couple of weeks, especially recovering from a C-section and sleeping on a hard couch with a newborn, trying to feed him and having stitches, and it was just terrible. My husband was working and my other son was two and he was two hours away, so I developed really bad postpartum depression at that time. It was just a rough time so I tried to like block it out. But these are like the highlights, I feel like. So we get home, everything is grand, but he ended up having like failure to thrive. He didn't roll over, he never crawled, he wasn't hitting any of his milestones and then he kept getting like fevers and swollen left nodes and like bulk infections. He would get COVID and RSV at the same time, or flu and RSV or like adenovirus, like it was just like weird. It was weird. It was not like Jace.

Kenzie: 22:31

So like we brought him into the pediatrician every week, they actually thought it was crazy. They thought I had like a case of munchausen by proxy because I was bringing him in so much and he was so sick, it was such gaslighting, it was horrible. And then finally, after bringing in like a diary and them doing like real notes, they're like, okay, he needs to like be seen. So we saw what was it I think infectious disease and they did some testing and they found out like some of his vaccine titers weren't up to par and that also is a cause of infection. So we did boosters. And then they were like, okay, we're going to do like a genetic panel. But they thought he had PFAPA, which is an auto inflammatory disease, but it's like the most common one and you outgrow it. I was not having that. I was like, no, we're going to do genetic testing. And that's when they found out he had the deletion.

Kenzie: 23:35

It was actually three days before Thanksgiving. I was trying to think which holiday it was, but they didn't know what to do. So they're like we're going to consult with a rheumatologist because this is not our expertise. This is not like a primary deficiency disorder, this is auto inflammatory cases. You're going to go here. So I felt like a little gaslighted by that rheumatologist because they're like it's lupus. I'm like this is not lupus Like I get it boys it's very uncommon anyway in boys for lupus, but my whole family has lupus. This is not lupus at all. These are not the typical signs. So I kept pushing and pushing and that's when they pulled out the textbook that was like 27 years old and was like your son has a rare disease. We were wrong and I cried. I cried, I was hysterical. I was just like how are you going to sit there and like gaslight me for 20 months thinking I'm crazy? And here we are. A rare disease, terrible.

Jen: 24:40

Imagine that, imagine that.

Kenzie: 24:45

That was a mouthful. I am so sorry.

Jen: 24:46

No, no, apologies necessary, and I mean this is a shout out to all those moms out there that you know you're not crazy, you know you are the one that knows your child better than anyone, and you know I've had many conversations for listeners that are not aware my sister-in-law lived through this and it makes me extremely passionate for the mommas out there, because you know she had notes written down in the chart of her child saying that mom was over over, worried, over exaggerating I mean just horrible things said about her and it turns out that her child had a rare terminal disease that was going to take her life.

Jen: 25:28

It was genetic terminal illness that did she took her child's life at three, and so you and I have had many conversations regarding this. I think I even sent you her Instagram to give you a fellow mom. You know I just I don't know, but again, I think sometimes we live through the things that make us more compassionate and seeing things like that, it surely does. But no mom should have to feel, you know, the way that you guys have felt. It's not right and that's where the medical care system and needs to change. People need to listen to the moms you know, or the parents out there better and not just jump to conclusions that that you're crazy or over worried or munch housing, because there are normal parents out there that just want to help their child.

Kenzie: 26:25

Yeah, sorry, going on a tangent no you're fine.

Kenzie: 26:30

I totally agree with you, because there is so many parents and I know many of us have watched this documentary on Netflix called Take Care of Maya. Yes, it's like that really Really hit home. I cried. I couldn't even get through it. It took me four times. I'm like I couldn't even imagine that mom, because there are so many times where I just cried to my husband and I'm like I know there's something wrong. He's crying, he can't sleep, he's suffering, he's waking up, he can't walk and they're just thinking I'm nuts. Like that makes any mom suicidal, especially when they're already going through like post-partum depression or having mental illness. Like it's terrible, I don't know. It just makes me so infuriated, oh.

Jen: 27:15

And then to wonder how many moms you know are having their children's taken out of their? Well, not just moms, parents. How many parents are having their children taken out of their home Because of things like that? And so for people that haven't watched the movie, if you think you can handle it, go check it out, but be prepared, it's emotional. You might want some tissues if you're a crier like me. Yeah, I mean I could go on a tangent again, sorry.

Kenzie: 27:44

Yeah, that's how I talk about this stuff. I'm like you know what I'm gonna get it all out. You're gonna hear me complain I'm a Karen, but you know what? There needs to be parents because they feel probably so intimidated to say anything and they feel isolated because they're like I never heard of this disease before. We're the only one. Like I felt isolated when I found out we are the only ones in New York. I'm like where do we turn? There's nobody here for us. But having the advocacy and awareness and turning your Like, your socials into awareness for your children, I have gained like a family of support and I feel closer to my support over social media. Then I do my own family because you guys get it compared to my family and friends, which sucks.

Jen: 28:31

It does suck and I want to give a shout out. There's another podcast that if people haven't listened to or checked it out, it's called once upon a gene With Effie Parks, and have you heard of it? Yeah, I listened to her. Okay, she's amazing. She's actually up north of me, I'm down near Portland, and she's up in the Seattle area and she's such a sweetheart. I just love her to pieces. You know I don't have a rare child, but I feel like I I get you guys just because I was an aunt of a rare child, and so to me, I get it, and so to me, I want to listen to these podcasts because I Guess I want to educate myself as well.

Kenzie: 29:14

Yeah, we need to have more awareness and even like strangers and parents, I feel like this generation's a lot of Judgment. And you know, josiah also has severe autism, but with his rare disease it also calls neurological defects. So my kid does not act like the typical two-year-old. He can come off a little bit aggressive and he doesn't talk and he's also a giant. His dad is six foot seven, so he looks like a six-year-old and Parents are so mean to us because they think he's six and just mean and I'm like no, he has autism and a rare disease and he had seizures and he's just not the typical child. Like educate yourself, do not be so mean. Not everybody leads the same life and it's just. It's hard being not even a rare mom but having kids with autism on the spectrum it's different and it's difficult and I wish it was not that way.

Jen: 30:13

And don't jump to conclusions. People don't just stop it. Knock it off right now, because sometimes what you think you see is not Always what is reality. You're only seeing a glimpse of things when you're at a grocery store or a parking lot or a park or wherever it is you are. You're only seeing a micro. A micro. Look into someone's life and and so you know, have you gotten Like random strangers, walk up to you and say things before We've gotten looks.

Kenzie: 30:44

I know Julius. One time he had the boys out and Somebody said something to him and my husband is the complete opposite of me. He is Very like shy and he is not confrontational me I will fight anybody, anytime for my kids. But he's kind of like, okay, I'm gonna take my kids and walk away and I wish I was there because he was very upset. But it also stems from familial aspects. Our families are very Taboo because you know we come from older generations, that you know autism really wasn't a thing back then and Mental illness and everything. It's like kind of keep it on the hush, like don't say anything. And me I'm not like that, I like to raise awareness. So I definitely don't get along with my in-laws and they're kind of embarrassed of my kids. They won't take them anywhere but I mean they're lost. I got good kids.

Jen: 31:38

So it's it's, it's our loss. I mean, that's what it boils down to. You know, anyone that doesn't want to take the time to enjoy your kids the way that you guys have is their loss. They're the ones missing out.

Kenzie: 31:53

Yeah, for sure. I mean my kids are Crazy, the rambunctious, there are lots of handle. I always say, if you want to use a weapon in World War three, come, take Jason Josiah, because you will take them and bring them back within an hour. But they're great kids, they listen. Sometimes, I'm not gonna lie they're also toddlers and they know right from wrong and they push buttons. But they are the sweetest and best kids and I would not trade them for anything. I mean I don't get any sleep, but it's so worth it. I.

Jen: 32:23

Wish you lived in Idaho and then you could go hang out with my daughter, because she's only a year older than you and her son's turning Three in July. So I'm like, oh my gosh, you guys could hang out all the time, be the best of the buds, your kids would get along, cuz my grandson is a little crazy too. Um, you ever want to move? Just move to Idaho, just say.

Kenzie: 32:47

Out of New York. That's too cold over here oh.

Jen: 32:51

I don't. I mean, well, I guess the part of Idaho that she lives in is actually pretty warm. It's called the banana belt and it's like the warmer area, like they don't get as much snow, they don't get as much of the cooler temperatures. It's kind of awesome. I'm considered kind of living a banana belt area also. You know, we're over near the ocean and so we don't really get the snow, we don't really get the colder temperatures that I had on the other side of the state. It's kind of nice we're in a rainy season but jealous it's almost over, I think.

Kenzie: 33:23

You can move here. I'm jealous, I.

Jen: 33:28

I'm totally a big fan of people, people moving near me. I would love it we can hang out. I Mean I'm old enough to be your mom, but we could still hang out, we'll go with that, whatever, all right. Well, is there anything that we haven't covered that you think we need to bring up?

Kenzie: 33:51

oh, We've been many my life disaster, but I'm always here if anybody wants to talk. I mean, I love connecting with people, it's just I always sell people. Give me three to five business days to get back To you, because my life is always a disaster.

Jen: 34:08

So Ah, okay, you say that, but you always get right back to me and you are just the sweetest and I adore you. I'm calling you out. I mean, I think it's lies. You say you're not gonna get back to people what you do.

Kenzie: 34:21

Give yourself a little bit, oh yeah.

Jen: 34:26

All right. Well, I'm sure we're gonna have you back on again, but you know, my spiny sisters, I want you to really just listen well to this story. If you need to go back or re listen to it again, and if you have lived, you know, with with what they're dealing with. Reach out to Mackenzie, you know. Lend some support. If you have helpful Information or tools, lend that to her too. You guys have some big trips coming up to help your son, right?

Kenzie: 34:56

Yeah, we are in the process. Now, since my husband has joined the army, we are switching insurances, which means we will be going to a new doctor in Virginia, and then we're also trying to either get to Boston or California. So it's like we're climbing this mountain, hoping we get to the top soon, pretty much.

Jen: 35:19

Yeah, yeah, you know, and trying to make sure he always gets the medications that he needs to help him.

Kenzie: 35:26

Yeah, those injections.

Jen: 35:29

So you know, I'll try to get some links from you to include in our show notes for everyone. You know you, you guys have Fundraiser stuff that's always going on. It seems like right, or are they still going?

Kenzie: 35:44

on. Yeah, I mean, they're there, I, if people ask for them, then I give them. I don't know, I just kind of fell off with everything recently.

Jen: 35:55

And we're gonna share them in the show notes. And if you want to support Kenzie and her family, please do so. Click on the link. Show some love, and you know, any amount helps, right, it could be five dollars, it could be five hundred dollars, everything helps, it all matters, and so just shower her with all that love and support. Okay, okay, all right, my spoony sisters, until next time, don't forget your spoon.