Blake Stuker talks about his daughter India’s spinocerebellar ataxia type 19.
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Transcript:
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
This week’s episode is a little bit different because I’m talking to Blake Stuker, whose daughter India was recently diagnosed with spinocerebellar ataxia type 19. Since India is just two years old, she isn’t yet in a position to share her own story, and I’d love to know what you guys think about this kind of interview. I think you’ll find a lot of the details relatable, even though the perspective has shifted.
Blake was also at home with India while we were talking, so you’ll occasionally hear her babbling and moving stuff around. Most of the time the background noise is minimal, so feel free to skip ahead or read the transcript if you have trouble hearing at any point.
And speaking of transcripts, I want to thank Felisha and Dave for helping me out this week! Transcripts are super important but unfortunately time consuming, so I’m very grateful for their help. If you have spare time and brain energy and want to help out with No End In Sight, please get in touch!
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: So usually when I’m talking to people I ask them about if they were healthy as a kid. So I guess the equivalent of that was… [child noises] Hi, hello!
Blake: She’s a camera hog. She’ll want to be the whole thing. So…
Brianne: Yeah, video chat is great with little people. They’re so cute. So how was her health, I guess as a baby? Like once she was born? How did things get started?
Blake: When she was born? She had good health. There was no indication that she was going to have anything wrong with her at all. Yeah, she was born healthy, all the testing that they did when she, when babies are born, came back healthy and normal. It wasn’t until she was starting to meet milestones and all of a sudden she wasn’t meeting the milestones and I just shrugged it off thinking it was like, I mean I didn’t shrug it off as far as severity now, but it was like some kids are slower than others and they catch up here and that’s what I thought. Because our first daughter was super quick. She was ahead of the curve on everything. And then we started getting tests done, people were just saying, “Well, she’s just lazy. She’ll get there.” You know, and we were just like, “Yeah, but she’s missing milestones. She’s not walking. She’s still not talking. She’s not…” A bunch of things added up. When we finally got her tested as far as she had ataxia and they said, “Well, it seems like she has ataxia.” So they did a genetic test about, I wanna say October.
Brianne: Okay. How old was she at that point?
Blake: She’s 23 months old today. She’ll be two years old a month from now. So she was, we started getting her looked at last March.
Brianne: Okay.
Blake: People were kind of shurgging it off, “Well, that’s probably not what’s wrong with her.” And the neurologist, because they said it was a neurological issue, they just didn’t know what. So he said, “Let’s just do a genetic test to rule anything out.” It was a 30% chance that we would even get anything back. Well, it came back with spinocerebellar ataxia type 19 de novo, which I don’t know if you know what de novo means, but that means it’s a completely new mutation.
Brianne: Right. So neither of you have it.
Blake: No, it wasn’t hereditary. Yeah.
Brianne: And so typically this would be a hereditary diagnosis?
Blake: Exactly. Typically it would be hereditary. It would be found in me or my wife and it wasn’t. So even before the diagnosis, we were already on the ball having her in PT, OT, speech, and some other therapy things for her fine motor skills and chewing cause she’s still going to keep her mouth… she still drools. So we just kept pushing ahead with that. And then we got the news and it was like, “Holy crap.” We started doing all the research, start trying to find out what it is because I’ve never heard of it in my whole life and I do have genetic diseases that run in my family, but I’m not a carrier nor do I have it as far as my genetic test goes. It skipped me. And so I was expecting a lot worse until the results came in and I was like, “Oh my gosh.” And that was kind of.. we did all of our research. Trying to find out what it was. Now that we have an idea of what it can do, because there’s over 60 different types of spinocerebellar ataxia and some are often fatal, some are more mild, some are severe. It depends on the type that you have, the mutation that you have. And because hers is new they can’t really give us a whole lot of information about it. They can only give us what’s based off of the other 58 or 59 types. So it’s kind of scary to say the least when we ask as far as life expectancy. That couldn’t give us a guaranteed amount, which I I understand. They said it would be unlikely to see her live to 60. Which yeah, I mean I probably won’t be around when she’s 60, I’m 30 already. So that’s a long time. But I mean that’s where we came to terms with that and she’s already had an MRI. She had an EEG yesterday and we haven’t got those results back yet. So it was just, they told us she’ll keep progressing and growing as a normal kid and everything like that. And then once the disease really starts to fight back at her is when she’ll start to take steps backward and her walking will change to just getting by to eventually she could be in a wheelchair or a walker of some sort… So you change your whole lifestyle to be super active. So it takes longer for it to break down those muscles and tendons and stuff like that. So she would have a longer time being a normal kid, I guess, you know?
Brianne: Yeah. And so you said you were doing some like occupational therapy, physical therapy, et cetera, et cetera, before you had a diagnosis. And what does that look like with someone who’s so young?
Blake: Basically it’s just a lot of playing, you know, for her age it’s to strengthen her legs because her leg muscles or her reflexes are strong. She has the muscle to do the stuff she needs to do, but it’s all about getting it from here to where it needs to go neurologically. And so they would have to do stuff like trying to straighten her feet because her gait was really, really wide. And they gave her these things called SMOs which helped turn her feet inward to straighten her gait to help her walk a little bit better which we have those, and they’ve been helping. But for the most part it’s just having her push stuff that slides on the floor with a little weight behind it to work her legs, work her muscles, and stepping stones, teaching her how to step over stuff cause she doesn’t really know how to do that still. So if something’s on the floor she’s going through it not over it cause she just cruises and she don’t care. In OT they work on like her fine motor skills, like they have this big… I remember as a kid having a big sandbox. Well they have a sandbox but instead of being full of sand it’s full of these beans, little beans. So they can pick the little bean up and move it and work on her fine motor skills and stuff and it’s all about working different things, techniques to get her to build new passageways neurologically and help her, you know, keep progressing.
Brianne: Okay. Yeah, that makes sense. And I’m sure it started before, but for the most part you continued with all of that? Or all of that still made sense after you got a diagnosis?
Blake: Yes. They said that “You guys are on top of it, you’re doing the right thing, keep pushing forward.” Because even though she’s at home, she’s still doing basic PT stuff. She still pushes stuff across the floor, her walker, or not her walker, her food table where we put her and she’ll push that across the floor. I have a laundry basket. I mean she still does that stuff every day, and me and my wife work with her walking. We’d sit 10 feet apart and try to get her to walk back and forth to us at the beginning. Now she can walk. She walks great! You can tell she has something wrong with her because she looks like a drunk person, but she can walk from room to room.
Brianne: And then okay, so then you got a diagnosis and you started researching. And this was new of course, since it’s not in either of your families. Has it helped learning the explanation? So ataxia is a neural degeneration. Is that right?
Blake: Yeah, cause hers is… it’s atrophy of the cerebellum. So as that deteriorates and atrophies you lose motor skills because that’s where all your motor skills come from. But yeah.
Brianne: And then so you got to learn about that, which probably felt like a really big crash course in this specific kind of medicine that I know I had never thought about a lot of this stuff before.
Blake: Yeah, no, there was so much stuff that… because when you look up just her… If I were just to look up spinocerebellar ataxia type 19, wait for results to pop up on Google, it doesn’t give me what I want to know. It gives you spinocerebellar, cerebellar ataxia, ataxia, all this other stuff. But the exact thing? I searched through hundreds of pages til we found something that had the name in there but no description. So it was hard to find but we did find information eventually. We did reach out to NORD. They’re an organization that deals with this and helps and spreads awareness. And then the National Ataxia Foundation. We’ve got in touch with people all over the world, in the UK, ataxia. All these people that are connected through that. Just for more information they’ve been great. And I mean we definitely know what it’s about now. And it’s only been two weeks.
Brianne: Yeah. Wow! So fast! So now you’re learning about it and you’re reaching out, and you were already doing some of the therapies and so what… I’m sure because you’re very in the middle of this and you guys have two kids so I can only imagine how brain exploding that would be to try and stay on top of everything. But in your outreach what else have you learned about treatment or what are people trying? Are you there yet?
Blake: Oh yeah, I jumped on it pretty quick. I mean, when a friend has something wrong with them or breaks their leg or something you want to do your best to help your friends or whatever. When it comes to your kids, it’s a whole different ballgame.
Brianne: I bet. It’s your whole world!
Blake: Oh, I know! So once that happened, I was like, “Okay, well what do we need to do?” Alaska. It’s a great state. It’s beautiful. I mean it’s not a great state, but it’s beautiful here. I like it at its best which is summertime and it’s only two months. The rest of it sucks, and it’s all snow and it’s horrible. But that being said the medical here for rare disease is not even close to on par. They don’t have anything to support these families and other kids with rare diseases. They send them to UCLA or other states that, you know, that costs a lot of money over the course of a lifetime. I did find out that Dr. Fogel, Dr. Brent Fogel, he is a… I don’t know if it’s right for me to say world renowned, but he’s very up there, very tip top as far as neurological goes, and he specializes in ataxia. He’s been trying to find a cure. And he is the chief investigator of all these clinical tests and studies that are going on. And he actually picked her up. I believe it was a two-year wait just to get in to see him and we will be going to see him May 6th
Brianne: Okay, so soon!
Blake: Yeah. He wanted it and he was like… “We sent the referral.” He approved it himself. So we have to fly. Well it’s in May. So we’re trying to move from Alaska back to the lower 48, Washington state where I’m from. So we’re close to Seattle where we do have a geneticist who is the best in the country. And then we can get to UCLA when we need to which won’t be as often, but it’s just learning that they do have clinical drugs that are being tested. They do have phase three trials on a trigriluzole and troriluzole. All drugs that are for ataxias that are in these phases where they’re about to be completed and able for human, not human, for general consumption and whatnot. So they are making advances. It’s just that it’s been slow and the studies that are going on right now. Some of them are a little more extreme where she won’t really benefit because they’re 100-year studies. I mean we’ll all be gone by then. I really don’t want… we’ll put her in that study to do some research on her but I don’t want… There’s other ones that are more beneficial to her and other things like that.
Brianne: Definitely. And so that’s on the like drug… are they mostly looking at drug studies? Like that’s what you’ve learned about primarily?
Blake: What I’ve learned about primarily is the drug studies because the reason why Brent Fogel is the best is because he’s already on the verge of a drug that seems to be reversing the effects of Alzheimer’s. SCA is… what it says online is it says spinocerebellar ataxia is a mix of ALS, muscular atrophy, Parkinson’s and Alzheimer’s all in one.
Brianne: It’s impacting so many systems.
Blake: Exactly. So if this drug helps Alzheimers there’s something in it that could very well help everybody with all these types of ataxia. Not to cure the disease but to definitely slow the progression which, I mean, if she lives to be 80 I’ll be happy.
Brianne: Yeah. That’s kind of what we’re all doing on a much smaller scale, right? Yeah.
Blake: There is other natural ways too, like her diet has to change. No processed stuff which I love to eat. I’m not the smallest guy, but I mean I love barbecue. Everybody loves all the good stuff that tastes amazing that’s not good for you, and she’s not supposed to have that stuff. [Brianne says hi to India] So we’re not going to rob her, but she does have to eat a lot of gluten-free stuff which… I made fun of that when I was a teenager and now I’m like, “Well that’s what we’re going to eat!”
Brianne: Yeah, now you’re the gluten police!
Blake: I know, I am so guilty of it, but yeah, it’ll be for the best.
Brianne: Yeah. I know diet stuff is really hard and it must be even harder with little people for about a million reasons. Yeah. Because she won’t know… yeah because little kids already don’t want to eat. Like I’m sure it’s 75% of what you put in front of them.
Blake: She grabs it and throws it to the dog.
Brianne: Yeah. You’re like, “Cool, good, good. I’m glad that we figured out all of these alternative food options if cheerios are off the table and all that stuff.” All the healh food. Cause I wonder, I don’t know… I mean I definitely don’t know about this diagnosis and I don’t know very much about ataxia, but I’ve have gone through phases of reading about Alzheimer’s and some of the other stuff. And it is interesting the way that they kind of overlap with like… Alzheimer’s has been connected to high blood sugar and diabetes and insulin resistance. And so diets that can manage that stuff can help with all kinds of neurological symptoms.
Blake: Oh yeah, and I mean that’s why at her age because she’s still so young, she’s not even two yet, it can make a dramatic impact over the course of the next 10 years. Compared to if we just let her eat crap and Mcdonald’s for the next 10 years that could… it ain’t gonna help her. I mean, the younger the better and the better you eat the better off you’re going to be. Not that it’s going to beat the disease, but you’re gonna be better off then if you didn’t, right?
Brianne: Yeah. Yeah. And something… Gosh, I talk about this book a lot, but there’s a book called the Wahls Protocol and it’s about MS specifically, but she also talks about how it relates to other neurodegenerative stuff. And she, she’s this doctor who had multiple sclerosis and ended up reversing a lot of her symptoms through diet. And if you have any more brain space and you want to read something like this, it’s a good book, I recommend it. Because she’s doing clinical trials with this diet and people with multiple sclerosis, but she believes that it would also help like people with Parkinson’s or people with Alzheimer’s or that kind of thing. You know, and it’s like, how can we go back and help our bodies on a cellular level to rebuild and repair as much as possible to try to keep up with things that are causing problems?
Blake: Oh yeah. And because also with what they can do, like stem cell research, that’s hard to do because you’re already born with all the brain cells you’re going to need, all the everything you’re going to need, so introducing a foreign stem cell, it’s like a 50/50 chance. Maybe it’ll work. Maybe it won’t, your body will kick it out. So it doesn’t seem the safest to me. I’m not against it or for it, I just… There’s stuff I’ve read about it and it’s like you can reverse some of the effects through just eating healthy or having… I guess with some of the trials I’ve read about that have happened in the past with ataxia, a significant boost of B12 I think it was, they did like 500 milligrams three times a day of B12, that helped something with it. I don’t remember exactly what it was, but it was like these crazy high doses of that and potassium that really helped. So I mean that’s just… You can get that from an apple or just, you know, being in the sun or however you can absorb it or an intake it. I mean, the better you eat, the better you’re going to be.
Brianne: Yeah. And that must be a real wake up call because it’s something that people don’t… many of us don’t have to think about for however long. I think it doesn’t… These choices don’t catch up to probably the majority of people until they’re in their 50s or 60s honestly. But…
Blake: Yeah, older. Yeah.
Brianne: Yeah. Now that I’m talking… Because I certainly have chronic health problems, but as I’m talking to more people with chronic illness, it’s getting normal to me that everyone I talk to is like, “Oh and I eat gluten free and I eat sugar free and dairy free and I do all this stuff.” But it’s not what most people are doing and it’s a huge adjustment.
Blake: Yeah, it’s definitely a wakeup call for sure. Like oh man, of course a mcmuffin sounds good for breakfast cause it tastes good, but you really should be eating kiwi and an orange and some organic oatmeal with no sugar in it. And it’s like, man, it just sounds boring.
Brianne: Yeah. It takes a while to find food you like, certainly. So then again, I know that it’s all super, super new, but also because you have two kids, so you’ve kind of been through the process before, right? Like you would send your kids to daycare or they go to school or not depending on what you do, but how has it impacted everything else about having a kid growing up, basically? Does that make sense?
Blake: It does make sense. It has made it harder. Like raising our first daughter who’s only four, she’ll be five in a couple of months. It was obviously, it wasn’t easy, especially she was harder because it was our first child, our first time being parents. And with India it was lot easier because we had already done it once. As far as where the disease has kind of, we didn’t expect this to ever happen. You don’t expect you or anybody you know to ever have something bad or rare happen to them. So it hasn’t necessarily made parenting harder with her. But it is, it is hard to think about. And I mean it doesn’t kill me, I will be taking care of her the rest of her life until she passes. Whether it’s in 20 years or 50 years and that’s fine. Whatever she needs, she’s going to get it. But we wanted her to thrive. We want her to be able to drive a car and you know, go to a concert or go to prom and all the stuff that a lot of people take for granted. Like I hate driving everywhere. I hate that I have to drive to work all the time because I’m a contractor, I own my own business so I’ve got to drive and pick up everything and do everything and that’s something she’s never going to be able to do as far as we know.
Brianne: Right. Based on what you know right now.
Blake: If the EEG comes back that she has epilepsy because of this disease she’ll never get her driver’s license. So it’s just small stuff like that that you never thought about when you were in the womb or when my wife was pregnant with her, but like man now everything you wanted her to be able to go to college and do all these things that we’re entitled to do, she doesn’t have that now.
Brianne: Right, right. And you just don’t know, like you said, because the doctors aren’t able to give you a good idea of what to anticipate and that would be hard. It’s like a grieving process for what you thought basically would be happening.
Blake: I’m in denial. I don’t think this is gonna take her life, but I mean, it will, eventually. I’ll come to terms with that when it happens because right now I’m not worried about her dying, I’m worried about getting her treatment and care and living the best that she can while we have her without thinking about that. Because that’s something nobody wants to think about whether your child is in their 20ss or 30s, nobody wants to.
Brianne: Yeah, of course. And so that makes sense. So you guys are looking to move to somewhere that is more, I mean there’s access to care like you were talking about and probably somewhere just that’s more populated in general might have other services and stuff as well.
Blake: Well that’s what we’ve figured out. I’m not from Alaska. My wife and the kids are born here. I’m from Washington state, eastern Washington, the other side from Seattle. And that’s only like four hours away from the Seattle Children’s Hospital. So we’re moving back to there because her physical therapy, her occupational therapy, speech, all the therapy she has to do here in Alaska are all in a different city. We’ve got to drive 30 miles, 20 miles that way. And so in Spokane where I’m from, she can have all of that under one roof in one place. And if we need to go to Seattle Children’s Hospital in two months, we can drive there in four hours. When we have to go to UCLA, it’s only like a hundred dollar plane ticket one way. And that wouldn’t be hard to pay for her and my wife or us as a family to go if we need to. So it just makes it easier. I mean, we’ve already had that. We actually just, believe it or not, we’ve been sharing her GoFundMe like crazy to try and get the money to be able to do this. And this morning I ended up on the local news down in Washington, almost 3000 miles away from me. And they put it on their page and I didn’t realize, I didn’t ask them, I didn’t contact them or anything. So we were rather blown away.
Brianne: Yeah. Like where did all these people come from?
Blake: Oh yeah. I called them to find out who did it just so I could personally message them or call them and thank them. And they ended up wanting an interview and now they’re putting her whole story on the news tonight at six, which I mean if that’s not good exposure, I don’t know what is. The sooner we get down there. So I was really blown away by that much people hearing about her.
Brianne: Yeah. Yeah. And are helping. Because how has that, the GoFundMe process been? This is like… There’s a running joke about American healthcare that it relies on GoFundMe, unfortunately. And so how has that been to set up and run?
Blake: It’s been fairly easy. Though me and my wife were both very hesitant on doing it because it’s hard to promote that without looking… We’re not needy. This isn’t for us to buy a new house or go on lavish vacations or whatever. I mean, and that’s a stigma that sticks with any sort of charity or donation that somebody is pocketing it and doing what they want. And I kind of… Me as a person, I didn’t care if people thought that. It’s not about them and I’m not trying to please anybody else including donors. I’m raising the money to get my daughter somewhere where she has a better chance at receiving help, getting help and living a longer life with the rest of her family.
Brianne: Quality of life.
Blake: Yeah. And so I didn’t have a hard time being like, “Well I don’t care what people think.” Because I’m kind of stubborn. But I mean when it came to the kids, I really didn’t care what people thought of me. But it was easy to set it up. It’s easy to promote it. Then being added to rare disease groups for support without posting the GoFundMe there. But I would go personally message people that I didn’t know that. Sure it looked like a scam because they don’t know me. I’m asking them to promote my daughter’s thing and I probably got turned down. But we actually today have had almost 1000 shares of her GoFundMe alone in two weeks. We’ve raised $4,600 already. So it’s cruising very well. It’s going very fast. And with the news getting involved this morning, I don’t see it really slowing down. But it was, I didn’t believe how many people actually… I knew people cared but I didn’t expect them to share. And continue to share after two weeks of being blasted with this in their feed. It’s been… It hasn’t been that bad. We haven’t gotten a lot of bad feedback. And when we did, I just shrugged it off. I didn’t care. I’m like, “Well, I don’t need them in her corner.”
Brianne: Right. And if people are mad, they don’t have to donate. So that’s fine.
Blake: Yeah. And I’m not taking their money to go buy beer or whatever stupid stuff people buy that scam donors. But…
Brianne: Yeah, who knows. But yeah, it’s one of the fears. And it can be hard to ask for help. I think in general when it’s…
Blake: That’s where it was hard for us too, we didn’t want… I wanted to be able to fund at all. And people, I’m a contractor. People are like, “Oh yeah, he builds houses, he makes a bunch of money.” But I’m still in my first year of business. I’m still not even established. So we would have liked to have funded it all by ourselves. But Alaska is a very, very expensive state to live in. It’s ridiculously expensive. So we definitely needed the help.
Brianne: Yeah. And how does… So you are self employed. How does your health insurance work? Does your wife have health insurance or are you paying for it?
Blake: We’re paying for it, but it didn’t really cover much. We had to look because she was getting help through, it’s a state organization up here called MSSCA. It was like the Mat-Su Valley children’s something. They help kids with disabilities, and because she has a global developmental delay she’s considered disabled and they want to help her and they wanted to put her on these programs that would help her get the equipment that she’s going to need to be able to walk straight and help with her posture and stuff. So they put her on what’s called Denali KidCare, which is a state insurance thing for kids that helped her get into her appointments. And they don’t cover everything. They cover a good amount of stuff. But before that, like her MRI was $3,800. That’s like… Uhhhhhhh. You know, most middle class people don’t just have a couple grand sitting in their bank account, you know? If I was a millionaire, I’d be like, “We’ll pay for it, all cash. We don’t need insurance.” But that’s not how the world works.
Brianne: Right. And certainly not how the United States works. Everything’s so expensive. So she’s on a public… I guess that makes sense. This is true for a lot of people with chronic conditions, that there’s a public system that helps, but still, especially if you need to travel for specialists and stuff so much further, there are limitations to that.
Blake: Exactly. Like if she were to travel… that’s why we’re trying not to be in Alaska by the time her thing starts because itn would probably be cheaper. It is cheaper to fly from Spokane to LA, direct flight. And I think it’s like $139 so all four of us could go. But if we stayed in Alaska, that would only pay for her and my wife to go or her and me to go. Just one parent. And the other’s got to stay and take care of our oldest.Yeah. So it’s…
Brianne: Yeah. You realize that there’s all these extra things to deal with that you probably haven’t had to before.
Blake: Oh yeah. Completely new. So it’s still a learning curve. It’s never going to be cheap per se. I mean, they told us it’s going to cost millions of dollars over the course of her life if she just lives a more average life. And I was like, “Well that’s fine. It can cost 20 million. I’ve just got to work harder to make more and work harder, and it just ups the stakes.” But yeah, it’s constant learning, constant thinking. I’m brain dead but I think I can handle this.
Brianne: Yeah, I bet. I’m sure your brain is very tired from trying to go through it all.
Blake: Well between this and getting my teeth pulled.
Brianne: Yeah. Plus you’re getting your teeth out. Yeah. And has anything… As you’ve been learning like a million things at once over the last couple of weeks, is there anything that has really surprised you? I mean, I’m sure the whole thing is a surprise, but like however you thought that the system worked or that health worked or whatever?
Blake: I think we definitely were surprised because the geneticist we have up here, he’s a really good guy, he’s really good at what he does. He’s the only pediatric neurologist in Alaska. So he went out on a limb for us and once he got the diagnosis back in, learned about the time we did what she had. He went and messaged an old friend of his who is a world-renowned geneticist in Seattle and referred this. So I mean, I was really surprised that she went right to the top of these lists. So she was on a two-year waiting list and she got in within two months and they said, “Well, we’re sorry, our turnaround time’s really slow, about 48 hours.” And we’re like, “The turnaround time in Alaska is six to eight weeks!”
Brianne: Yeah, 43 hours sounds great.
Blake: Yeah. And I was like, “That’s fine, we’ll take that any day.” And it was just… That was surprising that unfortunately because it’s so rare, people want to get at it super quick, which is beneficial for us, for her. And then the other surprising things were, we would take her to the doctor for her regular checkups and she would actually, she still is progressing. She’s getting not better, she’s getting more stable. So it was crazy to be able to see what she did before in the videos that we had, and then how she is now walking into the doctor’s office instead of needing to be carried into the director’s office. So there’s many surprises. Those are the ones that I remember the most that I guess are better to think about than the bad surprises.
Brianne: Yeah, sure. I mean, it’s coming from all angles probably right now. Yeah. But her gait is improving, her mobility is improving. Yeah. But the milestones are different.
Blake: Jumping, she’s starting to say more words, still not quite talking all the way, but she’s progressing. She’s better now than she was two months, and two months before, she’s progressing in a good direction. [Kid noises]
Brianne: I mean, I don’t have kids, but my sister has three kids and I have taken care of them for short periods of time before. So I know that it’s just chaos no matter what. That’s the closest I’ve gotten.
Blake: “No” is not a word in their vocabulary. “No don’t do that” and they’re like, “What? Touch this?”
Brianne: “Sounds good. I’m on it!” Yeah. So it’s diet and finding new specialists and trying out medication and yeah, it sounds like paying attention to the ways that she is developing are really important too. So that you can remember that things are still changing. Because I’m sure getting a diagnosis changes your perspective on everything, right? Like you think…
Blake: Yeah, we did. It’s hard because we thought now that we have a diagnosis, it’s going to be the end of the world. Now she’s going to start just not being able to talk or she’s going to go blind, which is a possibility. Or she’s going to stop walking and then… I mean it was hard to take that up front, but then they’re like, “No, no, she’s still gonna progress like a normal child for x amount of years. But once the disease starts to catch up then she’ll degress and start to take control over her. If we don’t anything about it, I mean, regardless of if we do or not, we can either slow it or let it happen the way it’s going to happen. So we’re going to try to slow it down.
Brianne: Yeah, yeah. To care. And then how are you guys doing because you haven’t had a chance to rest yet, it sounds like, or to process or…
Blake: Not really. I mean, we’re both super hopeful. We’re both pushing hard for our daughter obviously.
Brianne: Yeah, of course.
Blake: But it is… I’ve never been so damn busy in my life. Aside from working, working a regular job is fine. That’s just something that I have to do. That’s just how it is. But then I know my wife is at home with both of our kids having to pull both of them around to all these appointments just for India, while Ivy our oldest daughter still needs mommy time, daddy time, giving her attention. For the rest of her life most of the attention has to be on India. So we’re trying not to show that blatantly. It’s still, it’s just about balance and it’s hard to balance all of her appointments and then trying to keep our oldest, you know, feeling like she’s loved and, and it’s not that India is super special. You know, I mean, she’s not, it’s just hard to get that balance and make them both happy and feel loved. And my wife kicks butt at that. I don’t know how she does it.
Brianne: Yeah. That sounds like a really important thing to do and also a really hard balance because you can’t really stop doing what you’re doing.
Blake: No. Yeah. And my wife just, she’s been in college for… we’ve both been in college. She was going for her bachelor’s in environmental science and she’s about to graduate and was going to go in to get her master’s degree, but now we don’t have the time for that. She needs full 24/7 care that she wants to do. She doesn’t… I don’t blame her for not trusting anybody else because we didn’t want to put her in daycare. If we need to school her, we’ll school her in homeschool. You know, just because we can get across to her better than somebody she doesn’t know. We know who she is. And I mean, I don’t know, it’s just, it’s pretty rough for her too, to keep everybody happy.
Brianne: Yeah. Find balance for everybody. And you can’t know in the same way, like you can’t know what will be the best thing for her in one year, three years or five years, yeah. And when you’re in a busier place, what kind of programs will be available. I’m sure there’s more questions than answers right now.
Blake: That’s true. Shriners Hospitals reached out about wanting to help with flights and stuff. I forgot about that because Shriners Hospitals here in the States, they help fly you to your appointments if you have to go across the country and you don’t have it locally. We don’t. There’s LA and Denver and somewhere back east. I remember I think Johns Hopkins. I know there’s one there at Johns Hopkins. But still, that’s nowhere near, so Shriners has offered their help too and I forgot to mention that. But yes, it’s going to be a long road.
Brianne: Yeah. Yeah, definitely. And that’s like, we’re learning so much about how bodies work, which is good, but you’re like, “I’m still in the middle of it right now.” Like you said, where there’s just no information and you Google it and you can’t find anything.
Blake: There’s nothing published about the specific disease. There’s like SCA one, two, three, four, seven and eight. Those, are like the main mainstream versions of it. That are more known and they have a bunch of information on that as far as I could find where all the other ones, there’s nothing.
Brianne: Like they have a name but not much else available yet.
Blake: They have the name, they can tell you what gene it mutated in and that’s it. No lifespan, how it’s happened. How old they were. There was one boy who had something similar to her, but they stopped following him at 10 years old and he’s like 14 now so we can’t find out if he’s in a wheelchair yet. And it wasn’t even the same disease anymore. So it was like, well…
Brianne: Yeah, it’s a new territory. Which I can imagine if I were in that position that creates a lot of room for optimism. Like there’s definitely hope because they don’t know, but that also would make it much scarier because they don’t know.
Blake: It goes both ways.
Brianne: Yeah, totally. Totally. I think we’ve covered a lot of my main questions or points that I usually cover. Is there anything else that has stood out to you about this experience or that you’ve thought about while we’ve been talking or, I mean, you’ve been doing a of research and a lot of outreach at the same time, so I’m sure your brain is very busy, but is there anything we haven’t covered? Basically?
Blake: No, I think we’ve pretty much covered everything. I just think that in lieu of learning about her new disease and research shows about 150,000 kids or people, excuse me, people not just kids, in the US have some type of SCA and there’s literally no specialized organization to help with that. There’s the National Ataxia, which kind of helps with all the different types. But I think with this being said, I think me and my wife, we’ve been talking about trying to find something specifically for SCA cause it’s so serious and there’s other serious stuff out there. I’m not trying to downplay that.
Brianne: No, but that’s not what it’s about.
Blake: This is what I’m caring about right now. So I know with thinking about this and then the news media and getting ahold of you, because I think you added me on Instagram.
Brianne: Yeah. I look through the disease and illness hashtags sometimes because that’s the world that I’m living in now, so…
Blake: I put the hashtags in there. I was like, “Somebody’s going to see this!”
Brianne: Yeah, it’s true. It’s true. Because I do. Because it’s, I mean there’s a community certainly for people living with chronic illness. It’s like… Oh this is a question that I have for you actually. But so for people living with chronic illness, Instagram can be really great because you can connect with people who, even if they don’t share your diagnosis, like they might share some of your experiences. And so there’s really great community there and people build really helpful support networks. So you guys are also I know so fresh, but have you been able to find support for the two of you? Like networks and whatever it is. I don’t know what the version would be.
Blake: We are in a couple of, there’s one specifically for SCA that me and my wife are both a part of. And then I think my wife might’ve started it, the group, I’m not 100% sure, but it’s called POKA, parents of kids with ataxia. And now we can take that instead of, you know, we still care about the adults that have this disease. But they have lived their basically full life. They’re not starting to get bad symptoms until their late 50s, 60s and 70s. So the parents of kids they’re in the same boat as us. Their kids have this disease, whether it’s a severe, fatal or mild version. And there can be more support not just for us, but there’s other kids out there that are having this problem that she can relate to. So she doesn’t feel like she’s alone in this world because she doesn’t know what’s going on right now. I don’t want her to think she’s different. It would break my heart if somebody treated her like that, it would make me rather mad. So having these kids and these groups where she has people she can talk to and you know, if I have to I will find a way to have her be able to meet these kids, and play with them and be a kid, you know? She doesn’t need this disease to keep her stuck in the house all the time and not be able to go play at the playground and we’ll make sure she has that kind of life. And I think that group, even though they’re spread out across the US, the east coast, west coast, I think we’re the only ones in Alaska. But eventually we’ll get together, we’ll make a road trip out of it and go see all these people and I can get us out there.
Brianne: Yeah. Yeah. That sounds like it would be really important for you guys and for her in the future. Because that’s something that I guess when I was younger, like I never, I didn’t know very much about disability activism for example. And it’s something that I’ve learned a lot about in the last 10 years maybe. And it’s like, as you kind of surround yourself with people who are a little bit ahead of you and a little bit behind you on the experience of it can be so helpful. So you’re like, “Oh, I know how to talk about this now. I know what might be helpful or what to try next.” Or you know, just having people to bring whatever you’re facing as parents and with her too.
Blake: You can find something that… I’m sure we’re going to hit many walls and have to find our way around them and whatever. But if you’re going to save the next person from having to hit that wall and they can just use the shortcut that we figure out, you know, make it easier and quicker for everybody else, we’re doing the same thing.
Brianne: Yeah. Yeah. Just connecting people. That sounds like a very good thing. Even if I know sometimes online support groups can be difficult.
Blake: There are a couple where people would voice their… I mean, they get so frustrated with their disease and how it’s affecting them and they get pissed or they’ll vent their frustration to the group and I totally understand that. But then they start attacking people like, “No, you don’t know how feel!” I’m like “Whoa whoa whoa. I don’t know how you feel. I don’t have a disease and I’m sorry, but my kid does. And that affects me worse than if I had it.” That’s how I feel, anyway.
Brianne: It just feels different.
Blake: It just feels different.
Brianne: Yeah. Yeah. And I think like anywhere online, there’s a tendency… People can get kind of competitive almost about their symptoms. And it’s just not, it doesn’t need to work that way. [India says Hi] Hi! Hello.
Blake: She wants to be on TV.
Brianne: It’s always fun to see a little face. Where’d that person come from? Who is that?
Blake: Or she’ll take it and hang up on you. [to India] I’m amost done, hold on.
Brianne: It’s okay. We can start to wrap up.
Blake: Yeah, she’s fine. She’s tired.
Brianne: Yeah. Well I mean, you’ve talked to me for 45 minutes, which is a long time for a little one to watch their parent focus on something else.
Blake: Other than them. C’mere.
Brianne: But yeah, I think that was my last question. And thank you so much for talking to me and for sharing your story and India’s story over there.
[guitar riff]
Thank you for listening to episode 20 of No End In Sight! Since we recorded that episode, Blake and his family have successfully moved down to the lower 48, and you can find their GoFundMe link here at the bottom of the episode transcript. In the next episode I’ll be talking to a woman with PMDD and lyme disease, so make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts.
If you want updates about the show and to read my favorite quotes while I’m working on transcripts, follow me on twitter @bennessb and check out @no.end.in.sight.pod on instagram.
And don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’m slowly working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.