Under the Influence (with Jo Piazza) - Using Instagram to Save Your Child

00:00:00.000 Hello, hello, hello. Thank you for being here today. Before we dive into today's episode,

00:00:16.300 I just want to say a rousing thank you, thank you, thank you to everyone who has already

00:00:21.140 ordered The Sicilian Inheritance. I love this book. I love this novel so much. People keep

00:00:27.400 saying it's going to be the book of the summer. But that's only going to happen because of all of

00:00:31.740 you. Because so many of you have ordered it. So many of you have already invited me to come to

00:00:36.100 your book clubs. I'm zooming into book clubs. I'll be making cannoli. I'll teach you how to make

00:00:40.640 cannoli. And so many of you have taken me up on my offer of a free lifetime subscription to our

00:00:47.380 newsletter over the influence when you order the book. That is a thing that is happening. When you

00:00:52.400 order the Sicilian inheritance and you send me your receipt, I automatically add you for life

00:00:57.560 to our newsletter, to our coven. And I love this coven. I'm obsessed with this coven.

00:01:03.980 Okay, that's it. That's my mad marketing spiel for today. We have an incredible episode for you.

00:01:11.100 Now, we've talked a lot on this podcast about using kids as content in social media and where

00:01:18.480 that line should be drawn. We've also talked about mothers posting pictures of their sick

00:01:23.880 kids to get attention. But, but, but, but, but, but, there's always a but here, isn't there?

00:01:32.860 There is another side of this. There is. What if your child had a rare disease,

00:01:40.220 and one of the only ways that you could get the medical establishment to take notice

00:01:44.080 was to post about it. What would you do? It's an impossible question, and it's one Amanda

00:01:52.860 Byerly has been faced with. Last November, Amanda took her daughter Elin to go see an

00:01:59.440 ophthalmologist. Her left eye was starting to float a little bit. They went in that morning

00:02:05.120 thinking that Elin was either going to need glasses or maybe an eye patch to help strengthen

00:02:10.440 the weaker eye. They left the doctor that morning with a retinal dystrophy diagnosis,

00:02:16.380 meaning that Elin would eventually go blind. Over the next few months, they found out that Elin has

00:02:22.920 a rare dystrophy disease. And because it's so rare, there's not a lot of funding for it.

00:02:28.620 So it is essentially up to the parents to fund research and ultimately to find a cure.

00:02:35.920 And so Amanda has been posting on Instagram.

00:02:38.020 Because for better or worse, social media is a place where we can scream at the top of our lungs about the things that we need.

00:02:47.120 Amanda will do anything for her daughter. 0.94

00:02:49.760 And right now, what she's doing is speaking out on social media to try to get to a cure.

00:02:57.280 But it's tricky. It's always tricky.

00:02:59.540 and she has to draw new boundaries for herself every day

00:03:02.680 about the things she should share to help educate people about Elan's disease

00:03:07.300 and the things that might cross a line and invade Elan's privacy.

00:03:13.720 My name is Amanda.

00:03:15.440 I have two little girls.

00:03:16.920 One's five and a half and one's two and a half.

00:03:19.480 They're right at three years apart.

00:03:21.960 So talk to me.

00:03:23.020 Tell me your story from the beginning.

00:03:24.580 Um, so we, um, we're just normal average family, nothing special. Um, you know, my husband and I,

00:03:33.860 we're raising daughters, working, um, all the things. And, um, my older daughter, um,

00:03:41.060 I guess it was sort of in May. We noticed that her eye was starting to turn in a little bit,

00:03:46.180 just ever so slightly. Um, we ended up getting her an appointment, um, at our local ophthalmologist

00:03:52.200 office where they have a pediatric ophthalmologist. And they realized, yeah, she has something called

00:03:56.700 accommodative esotropia where when she's focusing on something, she is farsighted. So seeing up

00:04:02.380 close is a little bit harder. When she focuses on something, her little eye turns in. And so they

00:04:07.300 were able to correct that with glasses. We kept it moving. Everything was fine. But I noticed

00:04:10.860 over the summer that Elan's was doing it as well. And we got her in and the appointment was going

00:04:18.060 great, wonderful. Everything was fine. Um, they did notice, yeah, she's definitely gotten this

00:04:22.680 as well. Um, then we got in there to see the actual ophthalmologist and, uh, everything was

00:04:27.840 great. She had prescribed her with the glasses, said she thinks that would take care of it. And

00:04:31.520 then she looked in her eyes and when she looked in her eyes, um, you know, I think they're trained

00:04:37.200 to keep a poker face, but she looked like she had just seen a ghost and, um, yeah. And I knew

00:04:43.040 immediately something was really really wrong and she said she may have a retinal dystrophy you need

00:04:49.940 to go to imaging right now we're going to get that set up for you within the same office and then I

00:04:56.320 can either have you wait or we can call you and let you know what we see on the images at that

00:05:00.740 point we had been there for like three and a half hours so I said let's just do the imaging and go

00:05:04.400 and you can call us in the car and so she did they did the imaging we ate some lunch and then they

00:05:11.040 called us in the car and said, yes, we think she has a retinal dystrophy. The protocol here is to

00:05:16.720 get her in for genetic testing and to a retinal disease specialist to see her there. I mean, 0.97

00:05:22.860 of course, I was already had been on Google and figured out like dystrophy means bad. It means

00:05:26.880 the cells are degenerating or wasting away in her eyes. So I knew blindness and we just didn't know

00:05:34.180 what, you know, you get on there and suddenly you get on the internet, you realize a disease I never

00:05:38.180 even knew existed. There's so many different ways, like different genes that it can be affected,

00:05:44.320 you know, that cause this sort of thing. And so really, we're just left in the dark for a while

00:05:48.820 until we could get into it to see the genetics and then to see the retinal disease specialists.

00:05:54.980 But I mean, you know, we went from having a normal two and a half year old daughter,

00:05:58.940 I had never suspected anything, anything, never suspected she just couldn't see ever to realizing,

00:06:05.660 you know, within moments time during an appointment, you may have a child who has

00:06:10.060 not just a disability, but a severe disability. Wow. Wow. I mean, I think it is every parent's

00:06:19.660 nightmare. I mean, it is. I know that it's every parent's nightmare. We so often take health for

00:06:27.540 granted. Yes. And that in the blink of an eye with one doctor's appointment, it can all change. And

00:06:35.660 I'm I'm way more chill with with my third baby now but I will say every weird bump every weird

00:06:42.640 headache every puke in the night I'm like oh my god is it cancer is it right like right we are

00:06:47.120 like you know as as parents I think that we're trained to think like that what were the what

00:06:53.180 were the conversations that you and your husband were having at this point um we were devastated

00:06:58.200 um and you know so when they told us that we were being referred for genetics the doctor

00:07:04.140 at the ophthalmologist office said, you know, this is going to take a while. It typically takes six

00:07:11.020 months to a year to get in for genetics. So just be prepared for that. The same thing with the

00:07:16.840 specialist. It'll probably be a really long time before you get in. And I remember we both looked

00:07:22.160 at each other and we were at that point talking with her on speakerphone. And my husband says,

00:07:26.360 we can't wait that long to know exactly what is wrong with our child. And I know she didn't mean

00:07:32.060 in any type of way but she said well with what she has it doesn't really matter and and we looked

00:07:37.820 at each other and we thought well no it does matter to us and you know this is this was November 27th

00:07:43.880 when she went to the doctor you know it was the holiday season a time that you know you're just

00:07:48.180 supposed to be so happy and excited to spend that time with your family and I mean I can tell you

00:07:52.980 it was the worst time in our lives but we decided we weren't going to accept that and so we were

00:08:00.980 scheduled to see a geneticist um in in april okay but we decided that wasn't gonna work and so my

00:08:08.480 husband called every single day to get her in and lo and behold there happened to be a cancellation

00:08:13.340 one day so we got her in in record time and then the same thing with so how fast so how fast was

00:08:17.920 that so um it was the it was before christmas i think december i want to say yeah december 16th

00:08:27.020 Record time. Record time. Like, unbelievable, unheard of. And then the same thing.

00:08:32.400 What constantly breaks my brain is that it is possible. It is always possible.

00:08:38.740 Right.

00:08:39.420 But within, I mean, our medical system is broken in so many ways. It's filled with incredible

00:08:45.580 doctors and nurses and support staff, but the system itself is broken.

00:08:49.280 Yes.

00:08:50.200 And in my own experience with my weird genetic disease.

00:08:54.440 Right. 0.98

00:08:55.420 I have found that it is always possible, but you have to fight like fucking hell to make it work. 0.99

00:09:00.660 Yes. And that's what we've done ever since. You know, it really has been that. And with what she 0.91

00:09:06.480 has, you know, there's still technically no treatment. There's a lot of things coming down

00:09:12.120 the pipeline. But again, you know, I think sometimes from the outside looking in, if you're

00:09:18.200 not the parent, if you're not the patient, you see it as, well, there isn't anything. So there

00:09:22.840 there really is no sense, you know, it's not time sensitive, but it is to the families and it is to

00:09:27.120 the patients because, you know, this is our lives. We don't know exactly what's going on with our

00:09:31.180 child. We don't know why suddenly like her retinal cells are just wasting away. And so it was

00:09:39.340 important to us to get in sooner rather than later. Of course it was. Of course it was because

00:09:44.560 you also never know. So we did get the genetics report back and that was, it was maybe a few days

00:09:52.780 before we were supposed to go to Duke.

00:09:54.100 And that in itself is a miracle

00:09:55.140 that we were able to be seen and get that

00:09:57.180 before we went into our,

00:09:59.000 to see our retinal disease specialist.

00:10:00.620 We had this information,

00:10:01.680 which I felt like was great.

00:10:03.140 You know, it wasn't what we wanted. 0.99

00:10:04.880 It did show that she had a genetic mutation

00:10:06.940 on the RDH12 gene,

00:10:08.340 which is associated with early onset retinal dystrophy,

00:10:12.680 AKA a blinding disease.

00:10:14.640 And, but we did have that information.

00:10:16.600 So I felt like at least we have one piece of the puzzle.

00:10:18.840 Now he's gonna, you know, look at imaging,

00:10:21.280 do some tests like and he'll be able to tell us the other part of this so we can get a firm

00:10:25.520 diagnosis. But I'll tell you when we went in to see him, it was another long appointment with

00:10:30.880 lots of imaging, lots of visual acuity tests, all the things. And then you get to see him at the end.

00:10:35.480 And he said at first, I said, so is this RDH 12? And he said, who told you that? And I said,

00:10:43.460 well, we were kind of tipped off at the very first eye appointment that the doctor there

00:10:49.440 thought it was already H-12. I said, and then, you know, we have this genetics report. For some

00:10:53.620 crazy reason, they didn't have any of the records. They were, nothing was sent over to them. So he

00:10:58.320 had just was seeing her without anything prior, didn't have any baseline imaging, didn't have

00:11:02.780 the report. So we sat there and emailed it to him from our phone right there in his office.

00:11:07.740 And he told us, very matter of factly, that he believed that it was possible that her retinopathy

00:11:14.360 was not due to any sort of genetic mutation, but that it was some, could be something much,

00:11:18.860 much, much worse, um, that it could be something much. Yeah. What would be much, much worse?

00:11:24.600 He, the words he said would, it could, um, it could be systemic and I'm glad I was sitting

00:11:32.000 cause I had her in my lap and, um, she was actually kind of facing in towards me with her

00:11:36.800 head on my shoulder. She was over the appointment at that point and I couldn't even speak. And I,

00:11:42.340 I remember I just said, do you mean something in here? And I just kind of took my hand and went up

00:11:47.040 from down her head and down her body?

00:11:49.640 And he said, yes.

00:11:51.900 So then you think, oh, like, of course, you know, he ordered all these labs, like blood

00:11:59.300 work, kidney function test, the liver function test.

00:12:02.480 I mean, the whole shebang for everything, testing for everything that she might possibly 0.99

00:12:07.740 have.

00:12:08.040 You know, I was reading about cancer-associated retinopathy, kidney failure-associated retinopathy,

00:12:14.840 all these different things that can happen when you're, you know, somehow it can affect the back

00:12:21.680 of your eyes. And so that was very, very, very, very scary, a very scary time. And until we got

00:12:27.640 all that lab work that came back that showed everything was fine, we did think there's a

00:12:31.680 chance that this is way, way, way worse than just her eyes. Right, right. Of course. I mean, and that

00:12:37.120 is why the waiting, I mean, the waiting game is terrible for so many reasons. Right. That's one

00:12:44.020 of the reasons and you're trying to parent two small children living in uncertainty right which

00:12:52.980 you know is is impossible in in so many ways so you get the results back and then what do you learn

00:13:00.380 so yeah everything was fine he was at first concerned with some of her blood work um but

00:13:05.080 he spoke with um elon's pediatrician about that and the pediatrician was not concerned

00:13:10.060 um with that i think it's just a matter of like you have an ophthalmologist trying to look at

00:13:13.860 some blood work versus, you know, a pediatrician who's much better, well-trained at looking at

00:13:17.860 that side of medical situation, you know, and he's like, oh no, I'm actually not worried about

00:13:22.700 that. But then, so we had to go back and she had to go under sedation to have what they call an ERG

00:13:30.020 where they can like, I guess, test the activity going on in the back of the eyes. And that's when 0.78

00:13:35.740 we were given a firm diagnosis. You know, he just came out and the doctor, the retinal disease

00:13:40.620 specialist, you know, she was, I guess, waking up at that point and he just came out and

00:13:44.680 was like, can I, can I talk with you?

00:13:45.980 And we went into a separate room and he, you know, basically had his head in his hands

00:13:50.120 and said, you know, I, I do think this is classic RDH-12, you know, and it is one of

00:13:56.220 these things, you know, there are a lot of different inherited retinal diseases.

00:14:00.840 RDH-12 is by far one of the more aggressive ones, meaning that, you know, there's several

00:14:07.380 out there that fall under the umbrella of retinitis pigmentosa, which means, you know,

00:14:11.600 sometimes they don't affect people until they're an adult. And even then, they're very slow to

00:14:17.000 progress. This is not one of them. This progresses very quickly. And that's why typically from what

00:14:24.540 I've read and what I've gathered from other parents is that usually by the first decade of

00:14:28.320 the life, these children are legally blind. And by the second decade of their life, they are

00:14:33.400 completely blind. Wow. Wow. Let's take a really quick break here. And when we get back, I want

00:14:45.700 to talk about your decision to be so public about this journey and this diagnosis.

00:14:52.700 and we are back when you reached out to me with this story and you know we've we've done

00:15:09.580 episodes on kids and kids with health crises before and it it does divide people about whether

00:15:17.720 or not sharing a child's medical journey is invasive or it's something that parents have to do

00:15:25.800 in order to just break through all of the bureaucratic noise of the healthcare system

00:15:34.060 and to fight because social media is a way to fight for your child. And so ever since we started

00:15:41.320 talking about this I've been wanting to talk to a parent who has gone through this and who has had

00:15:48.500 to make the decision will I stay private or will I go public with this what decision did you make

00:15:55.780 you know at first we weren't even sure if we should tell her teachers we were worried like

00:16:01.040 I mean and we love her little school but we thought are they going to be worried about her

00:16:05.420 safety and like want to kick her out for that reason you know think like we're not equipped

00:16:09.000 to handle this. What's really weird about Elon's situation is no one would ever know. And that's

00:16:16.200 just so wild. But either way, we realized very quickly on this isn't something we're going to

00:16:21.900 be able to hide. This isn't something we're going to be able to just, you know, kind of keep,

00:16:27.060 you know, within the family and that sort of the thing. And then the other part was that we

00:16:32.500 quickly realized that there is a lot of emerging treatment that are coming that really need a lot

00:16:38.460 more funding. But what we have to do and what these parents before us have done is they started

00:16:43.780 these 501c3 foundations and things like that to be able to raise money, to be able to give to

00:16:52.240 different researchers and companies to come up with gene replacement therapies, stem cell therapies,

00:16:57.360 and even just like medications that could possibly help stave off the retinal degeneration.

00:17:02.920 and so we quickly realized like we need to help them raise the money and how do we do that unless

00:17:09.140 we are very public and very very loud and that's what we've done ever since then we just have to

00:17:14.460 be really loud about it you know sometimes we feel you know some type of way about like constantly

00:17:19.940 you know saying on our social media oh yeah like if you don't mind think about donating to this

00:17:24.500 this foundation but we don't have a choice you know we don't have two to three million dollars

00:17:30.080 to just hand over to a researcher or somebody like that, we have to raise the funds. And the

00:17:35.000 only way we can do that is through social media and different things like that. And we have had

00:17:38.800 a lot of luck with people sharing Elan's story and if anything, just spreading awareness that

00:17:44.060 this is an actual thing because prior to Elan's diagnosis, we certainly didn't know anything like

00:17:48.760 this existed. Right. Of course not. Of course not. Most of us don't, right? Right. Yeah. And

00:17:55.200 most of us do not have the kind of funds necessary to push through this research right and so no you 0.97

00:18:04.400 should never feel bad about asking people for money i ask people to order my stupid book every

00:18:08.840 day please uh ask ask ask for all the money um but talk to me about how the decision to share 0.96

00:18:19.560 on social media did you decide okay we're going to do this we want to be loud we are going to fight

00:18:24.800 And frankly, social media is the only soapbox available to us.

00:18:29.200 Right.

00:18:29.580 But did you set boundaries for how much you would share and Elin's privacy?

00:18:35.820 Yeah.

00:18:36.300 So even the pictures we wanted to show, there was one where it showed her in a little hospital gown.

00:18:43.760 And that was before she went under anesthesia for the doctor to be able to perform the test.

00:18:50.800 And Grant and I both looked at each other like, should we show her in that?

00:18:53.900 that feels a little, I don't know, it made us feel some type of way. And so we didn't. And then

00:18:59.840 later we had this wonderful woman, um, make a reel for us. And she asked for that particular photo. 0.88

00:19:06.520 And I thought, you know, she probably knows this better than we do. And if it's going to get more

00:19:11.120 clicks and it's going to get more shares, give it to her. And so we did, you know, so we, we try to

00:19:16.820 be discerning. Um, we also have a five and a half year old, um, and we had to decide what we were

00:19:22.520 going to tell her and when and eventually we did just because she's smart she's intuitive she knew

00:19:28.000 something was wrong and also she suddenly realized that her parents were spending a lot more time

00:19:33.680 working on something and she wasn't sure what that was and so we had to sit down and have a really

00:19:38.700 hard conversation with her and tell her this is what the doctor says may happen to elon and this

00:19:45.520 is why we are working so hard to fix it um we also want you to come to us if you have any questions

00:19:51.640 or if you're upset or sad about this, but also if we put this on social media, it may be that a

00:19:57.520 parent talks about it in front of another kid and then the kid says something to her, you know,

00:20:02.240 and so we have to protect her because she's innocent in this as well. And so there was a

00:20:07.260 lot that we had to think about, you know, how do we shield her from some of this or do we not shield

00:20:13.060 her at all? And do we want her to feel prepared if another kid does ask her about this and what

00:20:19.420 to say and you know hopefully she's willing to come to us if she does feel upset about it or

00:20:24.680 we don't know um but i did think it was sweet we found out at church the other day that when they

00:20:30.560 were doing their little prayer requests kids worship she asked her prayer was that her sister

00:20:36.080 could see and you know so kids know more you know even if you don't say it directly to them they

00:20:42.160 learn they overhear um and you know part of it is just preparing nola for these conversations

00:20:50.700 with kids about elon because you know we time is not on our side and there may be a day when elon

00:20:56.240 needs assistive devices um maybe even a cane and and people are going to ask her anyway so it's

00:21:03.940 better that we give her those tools and and we kind of walk through some of that with her so

00:21:10.220 she's more prepared to answer any questions because other kids don't know they're innocent

00:21:14.200 too they don't know they have questions when anyone is different no matter what it is

00:21:17.540 they have no idea and they love answers right kids adore knowledge i mean i'm of the parenting

00:21:25.400 school that's probably oversharing to be honest but um but it's true i mean kids kids want answers

00:21:32.680 and they have questions and they're so curious and what better time to fill them with knowledge

00:21:37.020 than when they're a sponge at this age to be honest right so are there any are there any

00:21:44.260 things that you thought about posting and decided okay that no that's a step too far like that is

00:21:49.000 that is the boundary for our parent our our family's privacy you know i don't think there's

00:21:54.020 been anything that has come up about that since then just because we we still i feel like the

00:21:59.620 things that we have posted are probably like on a need-to-know basis um basically just telling

00:22:04.900 people, hey, she has this. This is what we're researching money for. Elin's still two and a

00:22:09.840 half. She still does everything super well. At this point, I imagine, you know, there may be a 1.00

00:22:16.840 day when things are a little bit harder for her. And I certainly wouldn't want to maybe share all

00:22:20.740 of that. Or, you know, if she's having a bad day or she comes home from school and, you know,

00:22:25.320 someone asked her about like, you know, why do you have this? Or why can't you see? Or why do

00:22:29.600 you need to look at the book, you know, right in front of your nose or, you know, situations like

00:22:33.540 that. I don't I don't think that I would want to necessarily share that anyways, but I don't think

00:22:38.440 I would in any way, you know. But I guess more of that's going to come up. We're still so early

00:22:44.180 into this that we don't know. And and I understand, you know, the whole argument that you might not

00:22:50.040 want to just, you know, expose your children and, you know, tell everyone about all their

00:22:55.280 personal health information and stuff like that. But this is a disease that people are going to

00:23:00.300 know, you know, they're going to know. And I kind of like the control aspect of being able to say,

00:23:05.420 hey, this is what she has, but this is what she can still do. And I think if anything, we're kind

00:23:11.320 of more of the thought that we just continue to tell people all the things that she can do

00:23:16.060 versus, you know, oh, suddenly now she can't X, Y, and Z. I know there will probably come a day

00:23:20.860 where things become tougher for her, but I don't see us, you know, necessarily shouting that from

00:23:24.480 the mountaintops or anything like that. I don't think that's, you know, something people would

00:23:28.860 need to know. Right, right. But talking about what she can do and what people with this disease can

00:23:37.920 do, I think is a way to break down stigmas around differing abilities, right?

00:23:46.060 Right, right, right. I mean, even some of the kids that we've learned now that we're in a support

00:23:50.620 group for these, it's for parents and patients of, you know, that have the mutation on the

00:23:55.200 already at 12 Jean, you know, it's, it amazes me. One of the little girls, she's 10 now and her mom

00:24:00.220 was taking her skiing, you know, you know, and she does well and she just, you know, was in a swim

00:24:05.740 competition and, and things like that. And those are the things that I hope to be able to share

00:24:09.520 with people. You know, I don't need to talk about, you know, Elin's hard, hard days, but I can

00:24:13.180 definitely tell them all the wonderful things that she still does and is able to do. Yeah, of course,

00:24:18.100 of course. What has the community been like since you've been sharing and what, and what has the

00:24:24.020 response been like it's been amazing um you know if anything we have just a lot of people praying

00:24:30.240 for us which is what we we need most um and because this is really this has the potential to

00:24:35.200 ruin our family ruin our marriage you know it's hard it's hard on all sides um but we've we felt

00:24:41.320 very supported um we've had a lot of people just reach out to us you know one thing and and i know

00:24:46.820 everyone is well-meaning but you'll hear oh you're so inspiring and i think i don't want to be

00:24:50.500 inspiring. I want to be completely, totally uninspiring. I don't want anything like this

00:24:55.500 to have happened to my kid for me to have to be inspiring. You know, when it comes to my children,

00:25:00.140 I'd rather it not have happened. And so sometimes that you feel kind of like, oh, thank you. Thank

00:25:04.900 you for that. But I know that's just. But also, how do you respond? Graciously, graciously,

00:25:10.580 you know, thank you. With grace, we always respond with grace. But yes, I hear you. You're like,

00:25:16.460 I would prefer not to be inspiring but thank you yes that's the biggest thing um but again we've

00:25:21.820 just and really the community you know there's a something called the foundation um fighting

00:25:27.120 blindness for finding blindness and um we've learned a lot about what there are some really

00:25:33.140 rock star um doctors and researchers and companies who are working on like treatments every single

00:25:39.200 day and you know even just realizing all that they do and all that they've worked on and the

00:25:44.020 tedious things that they've like worked on for years and years and years to hopefully have a

00:25:48.020 treatment you know that to me is like now that is inspiring you know to see that these people

00:25:53.160 working on this and that's just a whole community that I didn't even know existed and so that's been

00:25:56.980 fun to like learn about the different doctors and companies and researchers that are that have

00:26:01.760 devoted their entire lives to these rare inherited retinal diseases which I'm sure there's probably

00:26:07.560 not a lot of accolade and and sort of thing for but they really are rock stars. With my own

00:26:13.740 journey into rare diseases because my form of muscular dystrophy, I have FSH, and it's super

00:26:21.120 rare. Oh, I'm so sorry. Thank you. Also, I have the gene for it. I have early, early symptoms,

00:26:31.240 but I'm doing great. And it's one of those diseases where you never really know what's

00:26:37.120 going to happen. But the doctors I've met, it's not a fancy disease, right? It's not like one of

00:26:42.840 those diseases that gets a lot of attention. Right. And I've been struggling with my own

00:26:48.040 decision of how much to share. Like, you know, I mention it sometimes. I do think that it would

00:26:52.920 help, especially women, because we don't hear a lot about a lot of women that have this,

00:26:58.200 that it probably would help if I shared my story. But I'm still figuring that out. And I think

00:27:03.600 that we all have to figure that out for ourselves. Did it feel like a big decision to have to make

00:27:13.780 on Elin's behalf, to share that on her behalf? And at what point do you think that she'll

00:27:19.720 understand that other people do know her story? Right. Oh, yes. I remember we kind of went back

00:27:27.680 and forth, back and forth about, you know, before we posted it, you know, like, do we say this? And

00:27:33.840 I remember even feeling like I needed to talk with my in-laws, you know, just because do they want,

00:27:40.220 you know, everyone that they know to know what's going on with their granddaughter. And, you know,

00:27:45.680 years later, is Elin going to be mad that I did this? I hope not. I hope that later she realizes

00:27:50.760 that her mom and dad did everything they could to help treat her.

00:27:56.780 And I hope that's what she gets from this.

00:27:59.760 The days of social media are so weird and so tricky.

00:28:02.940 And, you know, I can even watch these YouTube families, you know, with my daughter, and

00:28:09.020 I'll watch them, and even I'm like, oh, this is a little much.

00:28:11.880 Like, the kid falls down, and they stick a camera in their face instead of, I don't

00:28:14.980 know, like, putting some ointment and Band-Aid on it.

00:28:17.200 That feels weird and icky to me.

00:28:19.720 This case, one, we can't hide what's going on with her.

00:28:23.040 And two, we do have to be allowed about it.

00:28:25.680 And there may be a time when she's young and she's mad that we did what we did, which I look back and I'm sure there's not any parent who's never had a kid that's not been mad about something and blamed, you know, their entire everything about them that is wrong.

00:28:40.360 Oh, it was because, you know, my parent did X, Y, and Z.

00:28:42.500 But I think that eventually she will know it all came from a good place and it was done to help her.

00:28:50.240 Right. Right. Yeah. All children will despise their parents for something.

00:28:55.240 Yes. Yes. What's what's what's it going to be?

00:28:58.580 Right. I don't know. That's right.

00:29:00.840 I mean, I could make a list of reasons that I despise my mother. 0.98

00:29:03.740 Right. And we didn't have social media.

00:29:06.480 OK, we had a camcorder. Yes.

00:29:08.000 We had a camcorder and a Polaroid camera.

00:29:11.200 So, yeah, and I do think that what Elin will take away is that you are fighting like hell for her. And the age of social media is weird because this is how we speak to people. This is how we can fight. This is how we can get our message across.

00:29:30.620 And so I think you, the two of you, have done a beautiful job thinking about boundaries and thinking about privacy and what to share and how to share.

00:29:44.040 And it's that mindfulness that I think makes all the difference when we're sharing about our children, right?

00:29:49.480 Like what is, like what, it's the why, it's the why behind doing something and the care and the intense.

00:29:59.280 what is elon's situation now where where are you at right now so um like i said we're very fortunate

00:30:07.160 that like this does not affect her day-to-day right now and if we hadn't went to that first

00:30:11.620 eye appointment we still wouldn't know that anything is wrong with her and i don't mean that

00:30:17.120 i mean i am admittedly and i don't mean this this is certainly not you know this is a character flaw

00:30:22.580 off my own. I would say I'm part helicopter mom, part tiger mom. And so I know when something is

00:30:30.420 wrong with my child. I can, you know, feel their back and know if they have a fever. I can smell

00:30:34.380 their breath and know if they're getting sick. I know that's weird, but I can. I am, I pride myself

00:30:39.360 on being very in tune with them. And we never suspected that she had some sort of disease that

00:30:45.880 was slowly eating away at her retinal cells.

00:30:49.540 But there, you know, she has lost a lot.

00:30:53.000 We learned that at the appointment when she went under.

00:30:56.320 And so now it's just a matter of securing this treatment for her.

00:31:01.240 The sooner, the better.

00:31:02.880 The gene replacement therapy is probably the most promising.

00:31:06.100 And with that, they need so many cells left to be able to participate in it and for it

00:31:12.560 to help them.

00:31:13.560 And so we need this replacement therapy like yesterday.

00:31:18.660 I read a lot of stories about very, very rich people who are diagnosed with things or whose children are diagnosed with things.

00:31:27.520 And they have the ability to get to these treatments.

00:31:32.840 That is a very true thing.

00:31:35.300 Money grants you access.

00:31:37.420 And if you are not a very rich person, like the majority of us, then you have to use the tools that are at your disposal.

00:31:43.560 and you have to be scrappy as hell.

00:31:45.800 Right.

00:31:46.480 And, you know, my husband and I say this all the time.

00:31:49.180 Well, just the right kid hasn't got this disease yet.

00:31:52.340 If, you know, just the right person's kid were to get this disease, like, it would be

00:31:58.220 done.

00:31:58.660 You know, we'd have this figured out.

00:32:00.440 But sometimes Grant and I will look at each other and we'll think, you know, we're going

00:32:03.480 to be the right, this is, you know, we're going to do this.

00:32:07.440 We can be, we don't have this kind of money, but maybe Elon is the right kid because we

00:32:12.320 are that scrappy.

00:32:13.560 And we are willing to fight when we need to.

00:32:16.520 And post everything on social media while doing it, I guess.

00:32:19.880 Right?

00:32:20.460 Yeah.

00:32:21.260 I mean, oh, you are brave.

00:32:24.320 And I thank you for sharing your story and just being so transparent and honest.

00:32:29.640 I think, you know, these conversations are the way that we start to understand each other's lives in a way that we wouldn't otherwise.

00:32:38.020 And that is the beauty.

00:32:39.840 It's the beauty of social media.

00:32:41.320 I think that it gives us a gateway to a bigger conversation, like the conversation you and I

00:32:45.880 get to have today. Yes. Well, I'm so thankful for you for allowing me to tell Elon's story.

00:32:52.060 Well, I'm thankful for you for coming on. So we're just in a big gratitude spook right now.

00:32:56.420 Is it Thanksgiving?

00:32:57.860 Okay. I know. I know. Tell people how they can follow you and learn more.

00:33:02.180 So I'm at AmandaRayByerly on Instagram. I don't have a TikTok or anything like that. It's

00:33:08.000 basically just Instagram. And so you can reach me there. I also write for Static Media. I'm a

00:33:13.420 freelance writer. And so I do that by day. And I guess at night now, I'm trying to figure out how

00:33:18.220 to save my kids' eyesight. Yes. Yes, you are. Yes, you are. But probably during every minute

00:33:24.500 of every day. Yes. Yes. Yes. That is all that we have for today. Thank you for listening to

00:33:30.800 Amanda's story. When we first did our episode on moms posting sick kids, I had a lot of questions.

00:33:38.000 and I was skeptical. And I'm so glad that we got to see the other side of this. There's often very

00:33:44.820 little that we can say is right or wrong. And a lot exists in the gray area of social media.

00:33:51.880 And that's what we're here to talk about. We're here to talk about that gray area.

00:33:56.000 Thanks for being here today. I appreciate all of you. Go do something nice for yourselves.

00:34:01.740 You deserve it.

00:34:08.000 Transcription by CastingWords

00:34:38.000 You

Under the Influence (with Jo Piazza) - February 27, 2024

Using Instagram to Save Your Child

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