Autumn Fuernisen and Londen Tabor

00:01 Play. Go ahead.

00:04 My name is London, Tabor. I'm 38 years old. My name is Adam in the 15. Today's date is Friday, April 30th, 2021 and we are recording this conversation today from Gillette, Wyoming. I'm recording today with Autumn, who is my daughter.

00:23 Autumn.

00:26 How do you remember why I wanted to do this story? Remember me telling me why storycorps is a pretty, they're pretty. They're pretty amazing and recording stories and keeping them for other people to listen to him. It's just a great way to archived stories. And I hurt first heard of storycorps on NPR and years ago, listening to storycorps. I used to think.

00:51 Someday, I'm going to be on this show and someday. I'm going to tell our story and today is our opportunity. Isn't that cool?

01:01 So, you want to talk about today autumn?

01:04 Why do you tell everybody? What your favorite things to do? Are, what's your favorite things to do?

01:11 Cheerleading cheerleading. What do you love about cheerleading getting friend in there? And when did you start, cheerleading? What grade are you in?

01:22 9th grade high school girl with a hard this year in school because of covid-19 masks for 7 hours a day. 7 hours. Yeah, that's a long time.

01:39 And you guys were just telling me before this recording Autumn that you often call at lunch time to talk about your lunch. Is that a part of the day that you really look forward to your favorite time of day, isn't it? Autumn?

01:56 Yeah, always got some of which have for lunch yesterday.

02:01 Carrots.

02:05 The right now, Willis.

02:07 Apples and milk and there is nothing by the member number yesterday. You told me that number when she realized that you should have saved to bring home the other day care. And why did you want to save them horses that are across from from our house and they apparently like carrots and raisins. And the right thing, there's worse is right down the street and you thought it would be cool. I like save your like shoot. I should have saved those apples for the horses.

02:56 So another thing I wanted to ask about that you guys were just telling me about is I learned a new term today which is a she shed, but I thought of you were telling me that you have a butterfly house. Can you talk about that? What is what is a Butterfly House?

03:20 It's like basically like us, you can and why the cooler and why do we call it a butterfly house? And we raised. How many butterflies did we raise last year?

03:36 8080 butterflies. Do you know every single one? That's right after they flew out of the house. She named them as they were gone. Just random names and I mean she could think of so.

03:52 What kind of work does it take to have that many butterflies?

03:57 Do you have to do? Yeah, why don't you why don't you tell everyone, what a bunch of explain? How to raise butterflies? What what happens when we first get them and then they got to eat and you need an adventure.

04:14 Avenger toy that they turn into like they get super big. And then they get in there and then they fly butterfly, just like that. Like when they're on their cocoons, they Shake sometimes because play why did I say them? Because they're nervous. It's kind of their fault. Like defense mechanism. So they feel threatened. We go in there in there in a chrysalis. Looks so many butterflies to release crazy.

05:08 What made you want to raise butterflies and have a Butterfly House?

05:15 I just saw is love butterflies.

05:18 And ladybugs. Remember the first time that we raised butterflies? Remember, how how long do you think that was?

05:28 Oh, I'll go like probably like

05:33 Well, yeah, I was a long long time ago, like seven eight years ago, was the first time, probably how you were little and you got up. You got a thing for Christmas number. And then what else did we order the next year? Well, one time my, for my birthday, that Nana gummy butterfly and ladybug, habitats.

05:57 And then, tell it tell everyone what's the process. When you get the box? What do you do after you got it cuz they're too late. They don't come in the box, right?

06:08 Where the butterflies, don't get them live in the Box. What do we have to do in order to get them?

06:14 Oh, you got to go to inside Miller. You got to pull out birth certificate and put in the code and then they send them to you at the time of year. That's right. To release them after they're done. Yeah.

06:25 And then like we got some praying mantises and because it came in like a giant egg and we were going to have to eventually. They didn't thank God fearing a shoe box and then I'll just can't get out. There was lots of praying mantis babies. Yep. That was a surprise. Pretty cool. Huh? We released them in the garden so they could go eat. All the whatever is in the garden. I don't know.

06:58 That's right, whatever they eat. And what traditions do we have in the Butterfly House? When it's only been like a year since you had it, right? The year happened at covid last year. So that's why I did all the decorating the house was done.

07:15 We were going to have a butterfly house party, but

07:20 But we did. We had to have my first time, my first birthday party in my Butterfly House birthday on my birthday. Tell everybody. What kind of bike thing kind of bike. Did you get free bike? And why did I get you? The three-wheeled bike?

07:44 As the two wheel back with harder Autumn, cuz you have a harder time, riding a two-wheel bike. Now, don't you cuz dates d,

07:55 What stage do you stand for? Just so everybody knows?

08:02 Yep.

08:04 What? What are some questions you have for me right now? You have any questions for me?

08:22 What was my dad said you was? Your dad's daj. Repeat. It was 59.

08:31 M59. Remember what you are cage repeat was when you got tested.

08:39 How long was it from the time? Dad. Got tested until passed away?

08:48 Oh, your dad was tested for Huntington's disease. In 2008 by 2012. He would have had to be put in a nursing home because he needed help and your grandpa and your grandpa felt. He just needs to be in the nursing home and take care of him. So in 2012 is when he moved to Gillette to the nursing home and in 2018, he passed away. So he's only ten years after he was diagnosed, he passed away.

09:16 How old was Adam, when he got arrested for her? How old was I, you were eleven years old when you got tested. Now, how old was I when I owe you were you were two years old? I think when you're just a little baby.

09:41 Little baby driver. How old you were when you got tested for juvenile 811. Remember why we got you tested for it.

09:49 Something about like I need a help with school and I pee. A lot of changes in you behavior and stuff, but I'm trying to brush it off. But too many things were adding up and it was to the point where you were things were happening in school that you just really, really needed help with. And in order to get you help, we had to figure out, you know, maybe if you just had a learning disability, or if this was juvenile Huntington's disease, because if it was even out Huntington's disease, then we know it's Progressive, which means it's going to get worse over time. Right? So if it was juvenile Huntington's disease,

10:31 Things were just going to keep getting worse and the school needed to know so that they could help you with everything and, and you get a lot of help. Now. Don't you, don't you have, tell everyone what the school, they like, for you from beginning to end. What's, what's the day? Like? Like when you wake up on Monday morning? What's it like for you in the last Quick, you wake up and I have to help you get dressed. Right? Cuz you have trouble getting dressed and I got to help you brush your teeth. Anesthesia. I didn't have any cats or no cuz I'm doing a good job. I got you that but I did.

11:19 Only one I'm in. What? Else? And then, tell everybody. Are you tell everyone about your boss? The only one aren't you? And what time do you go to school this year?

11:32 An hour. Because why? Cuz like I need more time to get rid of you first school. Help you need more time in the morning. And you're the only one on the bus and only one on the bus in the afternoon, you like your own little personal chauffeur and assistants. Does he have a pair with you all day long at school, don't you for everything? Even at lunch? I think it was

12:02 What did Val say?

12:06 She said something like about my balance and she's getting on the bus. What she was saying was, are you, are you doing? Okay? Girlie, are you feeling okay today? And you were like, yeah. I'm okay, cuz she's been noticing. You kind of tripping up the stairs to get onto the bus. So, she was saying that if you feel like you're getting really unstable, then they have different devices that the bus can do that. Don't get for you to make it easier. Kind of like a lift. You remember the wheelchair lift that? Yeah, you know, why member that with my Dad? Yeah, so that's what you saying. So if you get to the point where, you know, if I tell you to slow down girl running on the bus and then, so, what's it like when you

13:05 What's it like at school?

13:07 My classes.

13:10 First area where I'm at. So, you know, I have English. And by the way, we watching a movie in English and English called Fahrenheit 451.

13:32 We are watching this movie. I think it's about the book that way, right? Then after I go to

13:43 Miss Rose's, what are you cooking in that class kinds of stuff like make shopping lists, right. And like shop online and learn how to do that. Right? Yeah. All kinds of cool stuff. And then I go and then want to go back up to second floor and I go to mrs. Miller Jim. And then after that signs,

14:25 So let's talk. You know what? I just thought of tell everyone about voice banking.

14:33 That's a big deal. I forgot about that. That's something you do every like what once or twice a week sometimes.

14:40 I divorce making of children Baby Boomers and the other one name is Linda. And remember, when we started having, you do voice banking.

14:56 Like wyona lightning like out in like six-seven. Yeah. And do you want it? Do you want to explain what voice banking is? Kind of why we why are we doing voice banking has been concerned that a fight like this point, like while I can't ever talk. We feel like these like, recordings into an iPad and then

15:34 And they're going to like it uploaded. And then like if I can't ever talk, that's going to be like a way that way I can, I'll be right in my voice like saying stuff inside of a synthesized voice, huh? Yeah, cuz when your dad remember, I remember when your dad he he really just started couldn't talk anymore and he use the iPad and he could. But then sometimes if I didn't know what he was trying to say, you could ask him like a five. Yeah, but then it then you couldn't even high five in the end. But hopefully we see what we're hoping. You're the first one that's doing this but date with juvenile Huntington's disease. That's for sure and especially in your school district. And yeah, all those recordings are going to be stored and hopefully really, really soon. There's going to be a technology that we're going to be able to take all of your recordings and put in. So by the time that you're unable to the really speak anymore.

16:30 Then you could just use that program in a strong voice. Yep. Yep. That's pretty good.

16:41 Banking iPad and like upload it after, you died like 4 and

17:17 City Autumn, okay, tell me.

17:31 At my school is right. I choose my own computer.

17:40 She, she didn't break it but like,

17:44 Like two times and only have 20 times yesterday, like couple of days ago or something, but sometimes Dairy. That's what you did something wrong.

18:22 Where does like waiting to see if I can find out what happened? And then we took it to this title a guy in my school and he s

18:33 He has already.

18:49 Let's talk about advocacy. Do you remember the first time you were an advocate for Huntington's disease for your dad. When I think back to the first time? We did anything, when we really was ready to talk about, it was on your dad moved into the nursing home, and we did an interview on the news station.

19:09 Yep, and I still remember there is the one. I will never forget what your dad said instead.

19:16 I'm so scared. You know, he said it was his exact words.

19:20 It scares them everyday to know that the possibility that his kids could have Huntington's disease like he does.

19:29 Yep, anyway, so that was your first and then do you remember after that? What was the, what was the second thing? I did that year after 8? After that. I was like, we got to talk about it. So I started member remember what I started the right, but we're going to say she did a run that year and then yeah, and then we would stand outside Walmart with your dad and we met lots of people in the community with HD, which was really crazy. We did a planter, right? We met Senator enzi and talk to him about Huntington's disease. We went to conventions.

20:11 I know you did do the talent show who? Yeah, it's not before the challengers Disney before convention. A month before convention. Where did we go? Who did we go? See in concert?

20:38 We got lost. We didn't get lost. You think we got lost. I wasn't lost. I was fine. You were just scared.

20:47 And, and yeah, and then after that, let's see if you did do two cartwheels. And now that's lot harder, isn't it?

21:08 Dangerous, though.

21:11 Yeah, makes me nervous. Okay, he's in my leg right now here. So you've been talking about Autumn's dad a little bit and I was curious. So, before we started recording Autumn, you were talking about what you like to do with him. What was that? That you guys like doing together? Bingo? Tell me about that.

21:46 And you got to go to the nursing home play. Bingo with him. Didn't you? Remember what we're just talking about that? Funny, the funny time where the other people just didn't want you taking her quarters and I felt like we needed candy instead of money.

22:03 And tell everybody. Let's talk about the really funny time when you were singing at the nursing home, when you thought was long time ago. And then there's old lady. She's had said, yeah, that was pretty funny. But used to spend the night at the nursing home to huh, and then or 11, when you got tested for ADHD, and I know we talked about

22:45 Wife onions.

22:50 Call Me Al Autumn. My God, I was going to say, yeah. Yeah, they did my wife. And then one time I visit in the tube.

23:13 In the freezer in that we went there. Walking guys, blood routed. Yep. That was for something else. That was for the kids HD study at the University of Iowa and not it was a bit, they do testing but it's a, it's a what do they call that? It's like an unnumbered or test or something like that. It's that information is not released to anybody. So although they did it say it's a study, the kids, the kids HD study is just an observational study. So but we did the testing a different type of test besides that study, you know, and remember we went twice before you were even tested because they wanted to make sure there's an it's really important rule out everything right? So good, the food. Yeah. That's what you remember.

24:10 And how did you remember ice cream? You remember, when we remember about a month later, when we got the results in the mail and we got got the results and I'm over at that approach. I do remember that, remember. I was just really sad, huh? Kind of shut down for a long time and I was just angry at the world, not at you, but then I finally had to say London.

24:48 You need to get up and go do something for your daughter cuz she needs you right now. And you got to stop sitting around and being sad. And, you know, cuz he knew.

25:01 So so, so terrible, but I need to get up and be strong for you. And start telling the world's nobody understood about this disease. I said I'm going to just get up and we're going to, we just need to start talking about it. And then you jumped on board and just the best little Advocate with me. Huh? Autumn likes to talk about it. She wants people to understand. Don't you? What's a, what's a mean thing? You want people with? Jhd anybody out there? What do you want them to understand about Huntington's disease and juvenile Huntington's disease.

25:37 It's like the worst disease ever, you know, there's not another different though, right? Cuz cuz most people have Huntington's disease or adults, aren't they? 90% of them are adults. Well, yeah, but the younger you are but worse it is, but I decided that it was hard to sit down and look at it was just hard to see all the videos out there and in all of it was a sad stuff and I was like needs it. You know, there's a still a life left to be live for you. And I think I thought that was the most important thing is I had to keep telling myself. I know what it's going to look like, you know, we remember what it was like in the end for your dad. And I, I know at the end, you know, I don't want to think about that. And I just want to focus on now and today, and having the best time with Kim. Yeah. I'm enjoying all the time. We can and doing whatever we can today.

26:32 But you know that you can, you know, we'll just take it one day at a time or all along the way. We'll talk about Huntington's disease and how we've made a difference, haven't we?

26:42 We've met so many people from all over the world that are so inspired and touch by everything that we're doing. Huh. Does that make you feel good? Yeah.

26:57 One from a dead. Say one, two of them are from Asia, and that's my only. It's a nice lamb in the month of May is officially dating. A proclamation from the governor last year. Didn't you? Sign, Proclamation, declaring. Wyoming is the month of May is officially Huntington and juvenile Huntington's disease.

27:35 Yep, you got me through all your good little Advocate, aren't you? And then we got our Tik Tok and we do all kinds of stuff on Tik Tok don't we? We we talk about HD but we also have fun and show people that you stole the life funeral left. We live in. You still do normal things, right?

27:56 Talk about talk about your Tik-Tok a little bit. Like what kind of videos do you make or or what has it been like to connect with a wider audience?

28:05 It's been Autumn loves to read the comments from people back right now. We're streaming on Tik-Tok live. So hello everybody. Hi. Thank you.

28:19 Don't get distracted by the common tick tocks been amazing because I'll tell you what Tik-Tok has honestly been part of for me and I don't know about for you. But for me, it's a way for me to cope and a way for me to find support and connect with other people from all over the world and ends and inspiring them helps me want to keep going. How about you? Doesn't that make you want to keep going? Like you see these messages from people and just the kindness and they just let me know. It's night. They don't have to send like Gibson, but they do people send you stuff and they're so supportive of you and danced and June, and may God our backs, and it's just like a whole new.

29:01 Outlets for us to, this is comforting. I think, you know, and so along with the support. We got, you know, we try to educate people and teach people about Huntington's disease and juvenile Huntington's disease. We talked about the differences in those that disease, but we also make Dance videos, don't you love to dance sometimes when the dance is over?

29:23 Suave Savage. This girl, she loves the throwback, throwback, too Savage for tap in here,. Aren't they Autumn? So what do we do? If it's too tricky, make up our own. That's right. But what do you think are go live on Tik Tok to try to show people or teach people would have went to shoot. What do you think?

29:58 Just because you died, that's right. Live life to the fullest and then just cuz you're diagnosed with a terminal illness, doesn't mean it's the end of your life. Just means you need to make the best of life, right? That's right. Yeah, Autumn. I have a question for you. What is your favorite thing to do with your mom?

30:31 This girl is literally by my side. I can't even go to the bathroom. She's like, the dog that comes into the bathroom when you're on the toilet. That's awesome. That she's in right in there with what's something fun that we do in your Butterfly House. Moving. It smell makes a pass from One Cop Car.

31:02 Silly girl. So much. I can't wait for summer for the sunset spot. We got that you and try to explain what that is a little bit or no.

31:20 I can explain it.

31:23 So that spot that's next to your house. We're turning it into a sentence. Bought my forehead so much stuff that we can get this. Girl. She got so much stuff. We're going to hang all those. She's got lucky and got so much beautiful thing. So much cool stuff to hang outside. Once it once it gets nicer directions to the money you got. Yeah. We could. We could be here all day talking about all the stuff you got. It's it's amazing. And that's what I find. So inspiring to is, is that we are

32:23 You're sharing our story with people all over the world. But and it's not just with you. No Huntington's disease family, but just regular people that are

32:31 I guess inspired by us and they're happy to learn more about this disease. But also it just I find it. I don't really know the word for it, but I just find it. So heartwarming to know that these people are complete strangers, complete strangers and they care that much. So many complete strangers care that much to, to listen to us and to support us. And that to me, is really comforting. And that probably is, what keeps me talking about it. And now it's like I got a whole new group of friends. We love this girl. How many followers we have now? You think, how many do we have on our our page are London and Autumn?

33:17 73000.

33:25 Yeah, we're going to have lunch after then, but you know, what else? We need.

33:30 About the hashtag juvenile Huntington's disease and what we've done with so much. So when we started and now guess what, guess what the other day, I looked, I could I just posted a video of yesterday or million views with just a hashtag alone. Yeah, we're dominating girl. We are getting the word out there and that makes me so happy to know that time to know that. So many people are listening and watching and learning so that make you happy. Are you proud of it? Do you like it? Sometimes? You don't like making Tik tok's cuz you like, I don't feel like it. I just want to play on my phone. I know, I know I love that and then I will be on her phone and over and over and over again. Won't you?

34:20 You're like our biggest fan.

34:25 Mandi Mandi. I should got a real good friend Mindy. And she's got some people that I've just been so supportive over and over again.

34:42 Remember what I told you about the Mindy virtue. She she told me, she told me that thanks to you, and she thought it was really strange and weird to send a stranger a card, but you thought, why not? And then when she did it, made her feel so good. And now she buys. So she sent you postcards all the time, like one every two weeks or something. And then not only that she sends cards to her own family and her grandkids and everybody. She knows and she just loves it all because of you.

35:18 So we have about 5 minutes left. I can ask you guys a question if that would be helpful or or something else, you want to talk about?

35:27 There probably will be after we're done here. But you know, it's all good. I've asked questions at London. I kind of wanted to ask you one, if that's okay.

35:38 You talk about a lot of the support that you've received from the community on Tik-Tok and your advocacy. And I was just kind of curious who has been the most kind to you in life.

35:53 Mehndi. No, I mean s t

35:58 I'm honestly, my husband, my husband, Chris has been, he's a, I feel like sometimes he's really left in the back back burner or on the back burner, just because he doesn't, he doesn't need baby. Have his name and face out there. But this, I mean this is how do I even know? How do I even begin to explain?

36:18 It's you know, my husband. My husband has been the most supportive person through everything, you know, we don't have any kids together. I'm at Chris this year. This may will be 12, 13 years old.

36:40 But, you know, from the beginning, when I met him, I had three children. Stephanie. I had three, I have three children, you know, and I couldn't understand why he would even want to be with somebody that has three children already, but he did and we made a family and not only

37:01 It's just crazy to think.

37:05 He's where he literally is their dad. He has raised them. He he loves all of it today and it's, it's just be just so she could officially calling her and her dad. But but it's some, you know, not only with the kids but also being so supportive of of Justin as well. And also putting, you know, after Autumn diagnosis, we were, I had my tubes tied so I couldn't have any more kids, but, you know, after meeting Crest and Pauling in Pub, and and I was like, I wanted to have a baby with him, but we kind of put it off and put it off and then when we finally did have the money, then Autumn was diagnosed with jhd and there was no way, you know, we can't

37:50 We have to focus everything we can so he kind of gave up a lot, you know, for our family and

37:56 And I just I love I love you so much for that. And I'm so grateful to have have met him in to have him in our lives. I was a fire looking at my ring.

38:13 When you got your ring, yeah, that's a sapphire diamonds.

38:20 Thanks for sharing that London. I appreciate it. Well, we have a couple minutes left. Is there anything that you guys want to share or Autumn anyting? What are you most excited for for the future to do this year in October with help for HD, huh? We're doing a community that I didn't even get into on. That's fine. But on advocacy in just little projects that Autumn and I are working on him getting together and we are trying to start working on, getting the jhd kids group together. Hopefully will be. We're going to go to Orlando either way for something called the help for HD Symposium this year. And it's just a place, you know, people to get together and learn. But we're working on really, trying to focus a whole separate Groupon ghd kids, because that is so much different than adults with the disease. And really, really important for these kids to me.

39:20 Relationships together and to know they're not alone and and have a place to have find support.

39:26 Have I like met anyone like in person with JC? Not yet, but it'll be really cool to Walnut. Yeah. Yep. I'll be really cool.

39:39 Anything else you want to say? You're going to go to just go there too.

39:57 So, that's a whole different story that.

40:04 I talked to many guys, not in that way.

40:11 I know somebody at Animal Kingdom wanted to, but know that Autumn wants to go there and reached out and he has a timeshare. That's, that's a whole different story that we don't have time for right now, but it was very generous. And yeah, we're probably going to meet him in Orlando. He's going to hook you up. But in the meantime, we got to fundraise for a trip, right fundraiser? Lot of money so far on Facebook, I think about $900 or so, so far, so that's pretty amazing.

40:42 What happened to him that idea about Bingo? We're still working on that. We're still working on that. But if anybody out there is listening in me. I don't know if I can follow us because I lost on tiktok Autumn, you know, the Warrior on Tik-Tok. She doesn't this girl doesn't post as much. Like she used to do what she does.

41:13 Yeah, okay. All right, folks. I'm going to turn the recording off. You can say, why don't you say goodbye or something like that and then I'll turn it off. Thanks to everybody who listened to her story today. And yeah. And by guys,