Parents’ Perspective: Brey and Her Dad | Episode #10

Episode 10

Parents’ Perspective: Brey and Her Dad

In this episode, we talk with Brey and her dad, Brett who states:

"...When Brey was younger and first diagnosed, there were the initial reactions of just trying to understand what FEVR is and what the implications are, and then asking what steps we need to take to help her, and what are the long-term implications."

We introduced Brey in episode 1, and here in episode 10, we get to hear more of her story as well as her Dad's paternal perspective on raising a child with FEVR. 

Brett's heartwarming stories of raising young Brey will make you laugh, cry, and understand what the opportunities and challenges are when raising a child with FEVR.

  • 0:00:07.6 Nicole: We want to welcome you back to our Through Our Eyes podcast today. My name is Nicole and I will be interviewing Brey and her dad. And today our objective is to get a feel for the challenges faced by not only Brey, but her family as she was going through early childhood, later childhood, and adolescence with varying degrees of visual impairment. We are here with Brey and her dad and they will introduce themselves.

    0:00:33.0 Brey: Hi, I'm Brey. Everybody should know me by now. I'm a big host here on the podcast. [laughter]

    0:00:38.0 Brett: And, hi, I'm Brey's dad, Brett. Happy to be here.

    0:00:42.7 Nicole: Welcome both of you. And thank you so much for joining us. One of the things that we've been doing is interviewing some of our podcast hosts families to get a perspective from what they may not know. So when they were younger, when they got their diagnosis, when you noticed that there were things going on. So tell us a little bit about Brey's story.

    0:01:04.6 Brett: Wow. Yeah, it's interesting kind of preparing, I guess, or going back through some of the memories, getting ready to talk to you guys today. It was, it's interesting. It was kind of a, I think for myself and Brey stepmom, Carrie and our family in general, there a lot came together within a very short period of time. So going back to when Brey was younger and first diagnosed, obviously there was the initial reactions of just trying to understand what FEVR is and what the implications are, and then how can we... What steps do we need to take to help her? What are the long-term implications? And while we're going through all that and being really focused on Brey in the moment at right in that same vicinity of time, her half-brother and half-sister were also going having some vision problems. And unknowingly we realized that they also were diagnosed kind of going again, Brey kind of led us down this path, but we realized through genetic testing and evaluation that they were also head FEVR as well. So it started this journey that we're still on for 20 years now. Just trying to make sure that not only Brey but the entire family is really just trying to move forward and be as positive and put them in the best position possible to succeed moving forward.

    0:02:27.3 Nicole: And how old was Brey when she was diagnosed?

    0:02:29.2 Brett: Oh, Brey, what were... You were about just nine, right?

    0:02:32.8 Brey: Yeah. Like eight or nine before.

    0:02:35.1 Brett: Before, right around your birthday. I was trying to think. Yeah, it was really close to your birthday. Eight, nine-ish, right? If I remember.

    0:02:39.9 Brey: Yeah. 'Cause we really had no idea before that. I mean, you weren't showing really any symptoms at the time and for me I was just kind of skating under the radar for the most part.

    0:02:53.0 Brett: Yeah. And it was what? Just an exam at school? Is that, if I remember right, it...

    0:02:58.4 Brey: It was. Yeah. They had started to notice it, but I don't think they really paid much attention to it, honestly. Really, it was when I hit heads with my sister [laughter] and mom thought I had broke my cheekbone and that's where it all kind of tumbled out from there, I just remember sitting in the exam room at our local ophthalmologist and him being like, "I don't know what this is." [laughter]

    0:03:29.1 Brett: Yeah. And I got remember getting the phone call from your mom just telling me what was going on and just, oh my gosh, just, but you go through like this, what reaction? And just trying to understand and comprehend what taking it all in and what the implications are. So yeah, it was nine and then I think closely thereafter, 'cause again your brother and sister were also being seen by other ophthalmologists in kind of being evaluated for glasses and looking at some of the other issues that they were having. So it all came to a head very quickly in the family, trying to understand and yeah, take in everything. It was a lot emotionally, I think as a parent you're always worried about... You're worried about the kids first and foremost and what things we need to do to put them in the best position now in the new reality, the new normal. But at the end of the day, I guess we always took a pragmatic view. The kids, Brey's been, look... I mean, you're doing, she's doing miraculous given her situation so independent and so proud of everything she's doing. And just always very much, so trying to focus on the positive aspects with the hand dealt and knowing that we're just here to support and encourage, I guess has been the one day at a time kind of mentality.

    0:04:47.1 Nicole: What kinds of challenges were you faced with initially when she was first diagnosed? Can you walk us through some of that?

    0:04:55.6 Brett: Well, I think just with FEVR, it's such a very poorly understood disease. At the time you could, looking on the internet, trying to understand what, how it presents itself in potential treatment and what do we do, it started by us going and working with the Flower Institute up in Rochester, New York, as part of this Strong Memorial Hospital. As part of that network, we were connected after working with her and Dr. Mina Chung, who unfortunately is no longer with us, was really instrumental at the onset with helping us diagnose what FEVR was, and that the kids did in fact have FEVR, and then with some of the genetic testing that kinda led us to this absolute outcome. But then quickly we got steered to, over to associated retinal consultants with Dr. Trese. So being in Western New York all things considered, we were blessed to be so close to Dr. Trese to be able to see ultimately what in our eyes was the leading world expert in FEVR. So I remember sitting in the waiting room with people that had traveled from other countries from around the globe to come in, and just thinking and given the situation that they were, they found themselves how fortunate we were that, yes, with many challenges, right? Like understanding and trying to move forward, but looking around, you just take things and recognize that there's always others that have a... That are less fortunate than you.

    0:06:28.5 Brett: So I think the biggest challenge for us was just treating Brey specifically, getting her the proper medical care that she needed at the onset, and then figuring out what the strategy was gonna be moving forward. For the other kids, it was like, what were the implications that led to restricted activities in school, right? The kids are at the time, were fully... Had their effectively their full vision, but still like, what measures do we need to put in place? So it led to a lot of restrictions in terms of just physical activities that they could engage in gym class, and things of that nature. So maybe not in the grand scheme of things, considering what others are dealing with, maybe not. There are others that, I guess for a young child though, that's trying to make them understand what the implications are for them moving forward and why. And so there was just dealing with and trying to support the kids, I guess, in the family.

    0:07:21.8 Brey: I remember like playing soccer up until I was diagnosed. And after that it was just like, "Oh, whoa, we need to take a step back here." And going from being able to be a goalie in soccer to having more sports goggles during gym class for things like dodgeball and stuff. And even then, it was like, "Hmm, you probably shouldn't be playing this." [laughter]

    0:07:44.4 Brett: Yeah. I think you were supposed to be playing dodge ball Brey. But yeah, it was having to give up the things that the kids loved and the kids, Brey and her brother and sister, soccer was a big sport for all of them, and losing that ability for them was traumatic at a young age and Brey was really good so it definitely was adjusting to the new normal. I mean, some of the limitations were hard for a small family of when you have a set of young kids. Right?

    0:08:16.1 Nicole: And I know you've talked about it before on the podcast, Brey, that you had quite a bit of vision for a long portion of your life. What age were you when you really lost a lot of your vision?

    0:08:31.0 Brey: So for the most part, all throughout my high school career, my vision was pretty stable. I mean I had... There was occasionally, something would come up and I'd have to go in for like laser surgery or I had to have a couple vitrectomies and stuff. But it was always mostly focused on my left eye, which had always up till a couple years ago had always been my "bad eye." And I had pretty much 2060 vision all throughout high school. I was able to drive and basically live a normal life. And then it was probably... Oh, I don't know, 18, 19 before I noticed some small changes in my vision, but nothing really too severe. It wasn't really up until my 21st birthday that they were like, "Oh, you can't pass the eye chart. We should probably take your license away. And I had driven up to that point. I don't know how legal that was supposed to be. [laughter] But after 21, that's when I really noticed a decrease in my vision. And then, last year I had to have a lens replaced in my right eye, which had still up to last year had been my dominant eye. It had been my good eye. So after that surgery is when things really started to take a turn for the worst. And that's just... It soon became that my left eye, which I had... I can count fingers from three feet away just out of peripheral vision had become my better eye. And that's just where I'm at now. So...

    0:10:17.2 Nicole: When all of this happened, it sounds like you had a pretty dramatic change in just how to function. What was the biggest challenge you first encountered?

    0:10:29.6 Brey: As far as losing my vision when... Like now, [laughter] like this last time where it was like a severe decrease in such a small amount of time?

    0:10:40.6 Nicole: Yes.

    0:10:41.0 Brey: Well, probably the biggest thing was just adjusting, especially, I'm in school and stuff. So I think having to relearn again how to be successful, work on a laptop, be able to navigate around campus and stuff with so much little vision was definitely probably the biggest thing. So...

    0:11:06.3 Nicole: How about as her family, what was the biggest challenge that you guys had to overcome this last time when she had such a dramatic change in her vision?

    0:11:15.3 Brett: Yeah. It's interesting. I mean, given Brey losing her vision, so I don't know, so recently so she's living independently with their grandma for the most part, right? And so as a parent, we're not there. I'm not there on the day-to-day with her. She's in school, she's progressing with her studies. And so it's just, what can we do, right? What does she need? How can we help her? But Brey is a remarkable young woman who's very independent and self-sufficient given everything that's going on. So it's impressive to see her to be able to adapt where others, you may have floundered, right? But I think it's a testament to her in a way of how self-supported... How self-sustaining she is with all this. It's remarkable, right? So as a father and a parent, you certainly... It's upsetting to see what goes on, but then to see how she's been able to respond to that has been really, really... It makes you very proud, right? So let's just...

    0:12:25.2 Brey: I think a lot of that has to do with how I was raised by you guys. It was one of those things where yeah, your vision may not be as good as everyone else, but you need to not let that be an excuse. And you need to push past that and figure out a way to do it. [laughter] I think that's honestly one of the biggest reasons why.

    0:12:49.9 Brett: Yeah, yeah. It's remarkable. I mean, people... When people interact with Brey that don't know her, the way she's able to interact with people, they may not even realize that she has such limited vision, so it's interesting, to kind of be able to smile and watch her interact with people when they do have that reaction, it's like, oh, 'cause she is so good in adept at her surroundings and understanding, just how to interact with people and stuff. So yeah, it's impressive to see how she's been able to kind of carry on as well as she has been.

    0:13:28.4 Brey: It's like one of my favorite things. It's like, how long is it gonna take for them to realize?

    [laughter]

    0:13:35.3 Nicole: It's a game you can play.

    0:13:36.8 Brey: Exactly.

    0:13:40.1 Brett: But I think that's one of the things with FEVR in general, that's so kind of just kinda in this... Going back to the sense of Brey kinda later, later in life, losing a lot of revision. That's one of the things that's so, I guess frustrating about FEVR is that it just, you can't control the onset and when it's gonna express itself and you're gonna have issues? I mean, personally, for me, I was in my thirties, I was 33 when I had my detachment, right? And I had lived my life up until that point with not having any issues at all. And then I went through, I had two, I've had two instructors myself, also my left eye, which is my bad eye, but it's just, so I think that's one of the things that you have to be, teach your kids just always to be vigilant. I think that's maybe the one thing that we kind of enforced upon the, forced upon them when they're very early is that if they think they're having, like be very self-aware and cognizant that if they think they're having issues, if you have flashes, why, okay, where are the flashes? Are they repeated or is it, how often is it occurring? Is it in one location? Is it in one eye versus the other?

    0:14:44.9 Brett: If you're seeing blur-like spots, like gray spots or blurriness, it's just all these things are unexpected floaters. Just like all these things that you just from the time they were very, very young all the way through. Now it's like how to just try to self-diagnose when they might be having problems. Just because with FEVR, because the way how quickly things can kind of inflame and how quickly things can progress. It's like you always have to be vigilant and just very aware of when that you may be having a problem, and I think that as much as we can is maybe the only thing that we can impart on the kids is just to teach them how to take care of themselves.

    0:15:23.7 Nicole: Agree. Okay, Brey, tough question time.

    0:15:27.5 Brey: Alright, I'm ready.

    0:15:28.7 Nicole: Give us some insight into, I can only imagine this was an emotional roller coaster for you to go through this, especially since you had fairly good vision the majority of your life.

    0:15:42.6 Brey: Yeah, it was, but at the same time, I think from an early age it was kind of always said that you could just wake up one day and not have vision. And I think I had heard it so much growing up that it was one of those things that I had kind of not exactly prepared myself for, but I had always known that it was a possibility. I mean, obviously, no one ever thought it would... No one ever thinks it's going to be them. But I think because I was made aware of it at such a young age that I had time to really sit and process it, as far as it actually happening that I'm still processing it. There are days where it really hits hard, but for the most part, I try to not really think about it too much. [chuckle] Like I try not to let it really control my life, especially just be, just, especially because I have a younger brother and sister who, I was like them, I never had issues with my vision, they're younger than me and it was just recently that my vision started to, take a turn for the worst.

    0:17:03.7 Brey: And I try to show them that, if that one in a million chance that it does, progress more for them, that it is possible to still live life and not hide in the corner all day, I'm still, I'm going to concerts and I'm still, I'm getting married next year. Like it's still, there are still things, there's so much more to life than just being able to see. So that I think is one of the biggest reasons that, I keep going basically. [chuckle]

    0:17:40.8 Nicole: I like it. Do you feel like leading up to the point where you lost your vision because you had heard so many times that this could happen, did you kind of take in the world differently as you got older and realized that that was a possibility?

    0:17:55.0 Brey: I think, once I had turned 21 and I had really started to notice a decrease in my vision, that's when I really started to take in the world, and really take a moment to just appreciate, the little things. I remember just sitting one day, it was like fall time or something like that, and just, I remember I was 22-ish probably, and I was up on some land on some property that we owned. And I just remember like looking out at the trees and being able to see individual leaves and stuff like that. And having that, having had that time to really take it in, is something I can look back on and remember, especially now, since I can't really... I can see the blobs, [chuckle], I can get super close and see, individual leaves and stuff like that. But I think definitely as I got older and noticed a decrease in my vision is when, definitely taking in the little things in life, appreciating the things that, you just kinda walk by every day. Not really giving a second glance to. I like your perspective, aside from not being able to drive, what are some of the things that you don't think you can overcome with low vision?

    0:19:20.9 Nicole: Flying an airplane.

    [laughter]

    0:19:24.5 Brey: Honestly.

    0:19:24.7 Brett: I was gonna say commanding a boat. So we're thinking, yeah, lines every.

    0:19:29.0 Brey: It's so hard to think that way just because there are so, can't think of a single thing I can't do, I can't do them. Maybe the same way other people can do them, but I can definitely do them. [chuckle], I went rollerblading or roller skating, a couple of weeks ago. Was it comical for other people to watch? Oh, I'm sure [laughter] I was out there slowly making my way around, but I'm still doing it. It'll just be different. But, so I was never planning on being a pilot. I was never planning on driving a semi. There's really not much that I can think of off the top of my head that I can't do, just do it differently.

    0:20:15.0 Nicole: That sounds like some really sound advice for anyone who has low vision.

    0:20:20.0 Brett: I totally agree.

    0:20:21.7 Nicole: Listen, I wasn't gonna fly a plane either, so we're on level playing grounds.

    [laughter]

    0:20:26.0 Nicole: What's some advice you would give someone who kind of follows your path as far as the timeline of losing their vision? What's the best advice you could give them?

    0:20:36.9 Brey: Probably to not stop living life if there are things that you wanna do. I didn't decide to go back to school until after my vision had decreased and honestly, just to keep going. Not let it really affect your life in any way. And it's going to take time to process and it's going to take time to figure out how, basically relearning certain things, but it's 100% possible. I'm not the first person to do it and I won't be the last person to do it people have been doing it forever. So just to keep going.

    0:21:16.9 Nicole: Sounds like I hear you saying that this does not define you as a person.

    0:21:21.6 Brey: I like to think of it as not defining me, but it's definitely a big part of my life. I also have a very weird sense of humor where I'd like to make jokes about it. I think I like to make jokes about it because it makes other people feel more comfortable around me. The other day when we were rollerblading, roller skating, having so many people watching me and be like, oh sorry, I'm blind. I can't see, watch outta the way. I think it just helps. I like to incorporate it into my life because it is such a big part of my life. I'm very open about speaking about it, especially with educators and my fellow peers and stuff like that, just to help them understand that it's a big part of my life but it's not the only thing about me.

    0:22:14.8 Nicole: What are you going to school for?

    0:22:16.3 Brey: Human services management. So I like to tell people it's a lot like social work. I always say it's cheesy but I wanna be able to make a difference in, at least one person's life. You know, whether that be through working with fellow people in the blind community or working with the homeless, or... I just wanna be able to help people, especially for those people who can't really do it for themselves or don't know the right path to go to be able to become self-sufficient and stuff like that.

    0:22:46.3 Nicole: Is there one or more than one person who's been really instrumental in your success? And you don't have to say your dad just 'cause he's here. It's okay.

    0:22:54.9 Brey: [laughter] My family honestly has been... They have always been there for me, especially when my vision started to get worse. They have always been there to push me to do my best, especially in school. I remember growing up, my dad always being like, "Oh, education is your only job at the current moment." And so I feel like I have kept that with me, just being able to really prioritize my life, and be like, "Okay, if I wanna be successful in life, I have to get an education," and so my family honestly, and obviously, my fiance and my friends and stuff like that obviously, but my family is probably my biggest supporters and stuff like that.

    0:23:45.2 Nicole: That's awesome. And when do you graduate?

    0:23:47.8 Brey: Spring of 2024, so next year.

    0:23:51.3 Nicole: You got a big year coming up?

    0:23:52.8 Brey: Yeah. I know.

    [laughter]

    0:23:55.7 Brey: Graduation in May and getting married in October, so.

    0:24:00.8 Nicole: That's awesome. So even low vision, you still have the same challenges that everybody else has?

    0:24:06.5 Brey: Absolutely. [laughter]

    0:24:08.0 Nicole: How about from your standpoint as her parent? Was there a support system for you going through all of this? Or is there an organization or anything that you can look back on and say, "Wow, they really made a difference and really helped me help her."

    0:24:21.3 Brett: Again, I think, I would respond in a similar way. I think family was always... My wife, Brey's stepmom was really wonderful given that she was dealing with a carload of all of us going for our appointments together and dealing with all four of us with dilated eyes, trying to chain link, kind of walk our way back to the car and not run into things, with our eyes closed because they're all dilated and the harassment that we used to subject her to in the waiting rooms. So I think as family for sure is key. I would go back... Dr. Mina Chung was somebody and Dr. Trese, were individuals I think that we're remarkable and the staff around them. Just really putting a human touch when we were in need and needed support, the people in those facilities were really, really remarkable. Genuinely, Dr. Chung had given me her cell phone and it said, if you ever need anything, if you have any concerns, do not ever hesitate to reach out. And that I think was just something that was really important to us at the time. And I think it was very easy to get overwhelmed in the moment. And I think it was always... I think we always tried to take a very pragmatic approach. We can only control our own actions, the disease is gonna do whatever the disease decides it wants to do, right? So we just have to try to be supportive of each other, support the kids and manage and do the best we can. So.

    0:25:50.0 Nicole: What's your best advice to fellow parents who are going through this?

    0:25:55.2 Brey: I think maybe that... It's easy to be overwhelmed by the prospect of what's unknown, right? And so if you're dealing with a situation where it's FEVR or anything else, and you are in a position where you don't know the long-term outcome, I think you stand on a cliff where it's very easy to fall into a very, very negative space. And I think what we always try to do, was to make the best possible decisions with consult of the doctors and staff, that ultimately would put us in a position that we could with confidence, regardless of the outcome. This obviously is not the ideal outcome for Brey that we would want, but it's where we find ourselves. And I think the only solace that we can take is knowing that we did everything that we feel that we possibly could, to put our kids in the best possible path, long-term path. So I think the internet's obviously can be a very, very scary place if you start trying to do some self-research. But I think certainly, I spent hours educating, trying to educate, and not just myself but the rest of Brey's family too. We spent a lot of hours just trying to educate ourselves on exactly what the disease was, what factors... What contributed towards it?

    0:27:16.9 Brett: So when we did find ourselves in medical console, that we could understand what was being told to us, and then use that to form the best possible... Make the best possible decisions, given the input, and we did rely on multiple opinions. So we went, again, we're going back and forth kind of bifurcating back and forth between Dr. Chung and Dr. Trese at the time. And it was interesting, they did have nuanced differences in terms of how aggressive they wanted to be in certain situations. And so, I think comparing contrasting, and finding a common path forward. I think was something that was really, I think important to us. Where you knew that you had two really good people in your corner fighting for you, and just trusting in their opinion, and then using that to kind of reach an outcome... Make a decision and kind of go a direction that as a family, was something I think that we repeatedly found ourselves doing. I was kind of just trying to make the best possible decisions.

    0:28:20.8 Nicole: Shelby, do you have any questions, comments, or input?

    0:28:24.3 Shelby: Yes, this is a question that I have for Brandon. What is the most prominent thing that you have learned while helping and raising someone who has a disability? And I'm gonna ask Breyanna the same question. What is the biggest, most prominent thing that you've learned from your parents?

    0:28:44.9 Brey: Do you wanna go first, or do you want me to go? [chuckle]

    0:28:48.7 Brett: I think the thing that I've come to appreciate is the strength of the human spirit. Again, I think, Brey, and others might not be as positive. I have such a positive outlook about things as you do, given their current situation. And I think, yeah, it's something... Trying not to get emotional, there's something that they take pride in. So I think that would be, for me maybe the most remarkable thing.

    0:29:16.0 Brey: Yeah. I'm trying to think, honestly, perseverance. Keeping, to be able to keep pushing and also patience. I've learned especially now, not being able to really read things or see certain things. And I find myself that I get flustered. I've always gotten flustered with myself. But especially now when I have to rely on others to just be patient. Especially if I'm working with my grandmother or something like that, and to be able to explain myself more, I guess. Not everyone's gonna know what I need all the time. So, patience and perseverance.

    0:29:58.7 Brett: Which 10 years ago Brey may have not been your middle name, right?

    0:30:02.2 Brey: [chuckle] Yeah, I know, that's what I'm saying. [chuckle] I said I always get flustered, but I have always been one to get very flustered by myself.

    [laughter]

    0:30:10.5 Nicole: Any other thoughts, Shelby?

    0:30:11.9 Shelby: None that I can think of. I think that pretty much does it as far as the questions that I have.

    0:30:20.0 Nicole: How about you guys? Any parting words, anything that you want the world to know?

    0:30:24.0 Brett: I just... For me I think I would just like to thank you guys for the work that you're doing here on the podcast. I think it's really great to see you guys kind of taking on this mission. So just want to say thank you, I guess, from a parent of kids that are afflicted by a disease that I definitely appreciate the work that you're doing, so...

    0:30:45.9 Nicole: We appreciate your contribution. Thank you. How about you Brey, anything that we didn't touch on that you wanted to speak about?

    0:30:52.7 Brey: I don't think so. I feel like we got all the good stuff in. [chuckle]

    0:30:56.8 Nicole: I think this was awesome.

    0:30:58.5 Brey: There were no awkward stories to be shared, thank goodness, so... [chuckle]

    0:31:01.1 Nicole: We still got time if there are some.

    0:31:03.3 Brey: No, that's okay.

    0:31:03.7 Brett: This is after all the episodes, right?

    0:31:06.1 Brey: Yeah, no, we're good.

    [laughter]

    0:31:10.0 Dr. Droste: The podcast is called, Through Our Eyes. Make sure to like and follow our Discord channel, Facebook, Instagram, and TikTok, and let us know whether you have any questions or have a topic you would like us to cover. We have tremendous things planned, and we hope you tune in again for our next podcast. This is Dr. Droste saying good night to all of you, on behalf of our staff, and the PRRF, thank you.

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