Pulled from a meet for his CGM's tape, a high school swimmer with T1D speaks out

A high school swimmer with diabetes is told he can’t compete at the state championships because of his CGM’s medical tape. It's a story that's been all over social media and national news outlets. What really happened here? We talk to Ethan Orr and his mother, Amanda Terrell-Orr.

They explain  what happened that day, what they’d like to see change and what we can all do to protect our rights when it comes to diabetes.

Also this week! Send us your "Dear Dr. Banting" audio! Details here 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Episode transcription below:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system.

This is Diabetes Connections with Stacey Simms.

This week, you've likely seen the story of a high school swimmer with diabetes told he can't compete at the state championships because of the CGM, his medical team what really happened here, we talked to Ethan Orr and his mother.

 

Amanda Terrell-Orr  0:41

The whole point of the rule is to prevent a swimmer from having a competitive advantage. You would not have to be someone who understood type 1 diabetes to look at what even had on his arm and know that of course that would not cause the competitive advantage. Of course, it was just medical tape covering up a medical device.

 

Stacey Simms  1:00

Amanda Terrell Orr and 16 year old Ethan join me to explain in their own words, what happened that day, what they'd like to see change and what we can all do to protect our rights when it comes to diabetes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two. That was almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.

Before we jump in. I need your help. I am trying something for November. I want to hear your dear Dr. Banting stories and letters. I posted this on social media. If you're in the Facebook group Diabetes Connections of the group or you get my emails, you will be seeing this this week and for the next couple of weeks. Because all the month of September. I'm asking you to record some audio. It's very simple. Just do it on your phone. As part of the dear Dr. Banting exhibit. We talked to the folks at Banting house the museum where Dr. Frederick Banting had his eureka moment where he came up with the idea that led to the discovery of insulin with other people. But Banting house has an exhibit called dear Dr. Banting. And I go much more in depth on this. It's a Diabetes connections.com. It's on my social media. I'm asking you, what would you say if you could thank Dr. Banting for yourself for your child? Right, just thank him. So all the specifics are in the show notes. Basically just try to keep it to a minute. I'd like to play these back during the month of November. I'm really looking forward to what you have to say. Don't worry about making it perfect. Just try not to have too much background noise use your phone's voice memo app doesn't have to be anything fancy and send it to me Stacy at Diabetes connections.com I cannot wait to hear what you have to say.

Alright if you haven't heard and boy this was all over social media last week and this week. Here's a quick synopsis of what has been reported. Amanda and Ethan will go much more in depth and and frankly set a few things straight that were reported a little bit inaccurately even has type 1 diabetes. He was diagnosed at age 10. He wears a Dexcom G6  he uses simpatch the brand of the tape is not important, but you should know that he wears the medical tape over the Dexcom as many people do, and that's pretty much what does that issue here. He also wears a Tandem t slim x two pump that he removes most of the time when he swims.

Ethan swam all season for his high school in Colorado Springs. No issue he had the CGM on for every meet. But at the state championship, as you'll hear, it became an issue. And I'll let me tell that story. But you should know going in is that this is not a lawsuit. The family is not suing for damages or anything like that they filed a complaint with the United States Department of Justice, Civil Rights Division. This is not about money. And you may have also heard that the CHS at the Colorado high school activities Association, which is receiving the complaint here. They say that Ethan did not have a signed medical authorization to have something like this. Well, he has a signed 504 plan. So does that overrule? Or could that be looked at is in place of what they're talking about in terms of medical authorization to wear tape in the pool because it applies to his diabetes and his diabetes medical management plan, USA swim, that governing body does allow medical tape. So there's a lot going on here and I think it's more in depth. And then you've seen in certainly a lot of these media reports, as well done as they are, you know, these people don't speak diabetes, they don't cover diabetes on a regular basis. So it's really excited that Amanda and Ethan agreed to come on and share their story where we could really kind of drill down and figure out what happened here and more importantly to me learn what we can all do to prepare our kids for sports and to kind of learn what we can all do to stand up for ourselves when it comes to diabetes. Right.

Okay, so quick housekeeping note, I'm nosy I like to talk to people so we set the table for a while here I talk about his diagnosis story how he adjusted to swimming you know all that kind of stuff. So if you're just here for the lawsuit stuff, we don't talk about the actual swim meet until about 12 minutes into the interview. So you could go ahead and skip ahead I'm not offended but just know that there's some getting to know you stuff that happens before we talk about the nitty gritty

Alright, Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's what most of us carry fast acting sugar and in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the Gvoke Logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

Amanda and Ethan, thank you so much. We did this on short notice I really appreciate you coming on and sharing your story.

 

Amanda Terrell-Orr  6:27

You're welcome. Thank you for having us. Thank you.

 

Stacey Simms  6:31

And Ethan, you got up pretty early to do this. I am East Coast, your West Coast. So I appreciate that very much.

 

Ethan Orrr  6:35

It's all good.

 

Stacey Simms  6:39

Let's back up a little bit before we jump into what happened here and the lawsuit and everything. Amanda, let me start with you. Tell me your diagnosis story.

 

Amanda Terrell-Orr  6:48

Sure. So Ethan was 10 when he was diagnosed, and our diagnosis story, I think is fairly typical of other people we had noticed, Ethan's teachers had noticed that we had noticed that he was going to the bathroom way more than usual. So I took him to his pediatrician and expressed some concern about that didn't really know what might be happening. They did a test of his urine. And it didn't show any kinds of problems with sugar or ketones or anything like that. So we just sort of stopped at that point. And then you know, weeks go by, and this is still happening. We went on a small vacation and even drank all the bottled water that we had, and was still going to the bathroom all the time. And then the day before Easter that year even had been kind of wrestling with a friend. And he started to be short of breath. And he also felt like really like something was wrong. So the morning of Easter, we wake up and I look in his mouth, and I see white spots in his mouth. And I say to him, it's time we need to go to urgent care. So in the back of my mind this whole time has been some education that I saw on a friend's Facebook post about type 1 diabetes, her son has type one. And she always posts educational information. And so in the back of my mind, I was thinking, I wonder if the test whatever they did at the pediatrician was wrong. So we go to urgent care, they test them for strep throat, of course. And then I mentioned to the doctor that I'm concerned because of these other symptoms. The doctor, of course, has someone test his blood sugar. And luckily for him, it wasn't extremely high. He wasn't NDK. But urgent care at that time, send us directly to the hospital. So Ethan really stayed a day in the hospital. And the next morning, we were able to connect with the Barbara Davis center part of Children's Hospital in Colorado. It's an excellent place for treatment of kids with type one. So we were able to go there and immediately start connecting with resources and other families and of course, like, like everyone after diagnosis, drinking from the firehose to try to figure out how are we going to live in this new life?

 

Stacey Simms  9:10

Even What do you remember that time?

 

Ethan Orrr  9:12

I remember during the day before with all the symptoms that I would wake up in the middle of the night like to use the restroom. I didn't know what diabetes was immediately in the car. So mom was tearing up a little bit on our way to the hospital. And she when I asked asked, like, what is diabetes? She's like, well, you're gonna be getting quite a few shots today. Because like home, right? No, I like I thought she was kidding. At first cuz I've never heard of some like that. The beginning is I was just in shock a little bit. But then like, I slowly edged in or wet or things will be good. Nothing's gonna change too much.

 

Stacey Simms  9:53

I don't want to fast forward too much as we're getting to, you know, the news story here, but you're 16 now, so Were those six years. Obviously you play sports, did things kind of go to a better place? Do you feel like you guys managed it pretty well?

 

Ethan Orrr  10:08

Right? When I got diabetes, I was still competing, swimming wise, and I was trying to swim for the Colorado torpedoes in Manitou. At the time I, I had my CGM, but it didn't work in the water was a different type of CGM. So my phone couldn't connect in I was in a spot where I was close to my honeymoon period. And so we had a we are way too many troubles, trying to like dangerous troubles trying to be able to swim that year. So I ended up just pulling out, you know, we made a family decision is too dangerous, because I could feel my blood, like when I went low or high or anything like that isn't that low? This year, at the beginning of the season, we are a little bit of a problem. Not a little, there's a big problem at the beginning of the season, because my body wasn't ready and adjusted for stuff like that. So I had a lot of very, very bad lows during some practice for like about a month. And then it finally picked up and I was completely fine after that. And I was able to swim very well with the rest of it without blood sugar issues.

 

Stacey Simms  11:16

Amanda, let me switch over to you. Tell me about that experience. Because I know with my son, every seat Well, first of all, he changes sports every couple of years, which is bananas, because we figure it out. And then he moves on. So what was swimming? Like? Yeah, you hear you,

 

Amanda Terrell-Orr  11:29

I hear you. Yes, we have that experience as well. It sounds like our kids are similar that way Ethan likes to jump around sports. So he had been even been competitive swimming for not an insignificant amount of time, I would say when he was diagnosed, and it was just in that honeymoon period and learning everything. And being just terrified of every significant low. You know, at the beginning, those things seem really insurmountable. Because even had a couple of really scary lows, it was also kind of affecting his confidence to stay in swimming. So sadly, something that he really loves. What we said is we put it on pause. We didn't think it would be on pause this long. But it was really Ethan's choice. And so we were really happy this season, when he chose swimming again. And then he started swimming, and everything that we thought we knew about management of his diabetes changed in some ways. And in Ethan's case, he was he's very active, he's very fit. But his body was not used to the kinds of energy that need to be expended to swim in particular. So we tried all the things, all the tricks, all the tips that everybody gave us. And he was still having really significant lows, having to be assisted out of the pool sometimes. But to his credit, and one of the things I'm so proud of him for is that he swam right through that he had to sit out of practice a lot because of low blood sugars. But he still kept going every day. And he believed us when we said your team is going to help you and by team I meant his endocrinology team, and also athletes with type 1 diabetes. So we threw out questions out there into the social media world and got great advice from other people, athletes with type one. And we combine that with the guidance from our endocrinologist and Ethan's body also adjusted to the swimming. And so at the end of all of that he was at the end of the season, he was really doing pretty well in terms of being able to swim safely. So we were very proud of how he came through this season. You know, to be honest, as a person without type 1 diabetes, and an adult. I don't think I would have done that. It was very, very hard, but he stuck it through and was fortunate enough to be able to go to the state championships.

 

Stacey Simms  14:01

He said I'm curious what worked. Looking back on all of that.

 

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Now back to Ethan explaining how they got his blood sugar more stable during and after swimming.

 

Ethan Orrr  15:03

So to be honest, the only reason it worked, I in my body got adjusted. At the beginning of it, I would have to take seven juices, maybe practice a, like during the entire thing, not not like a one point. But like throughout of like a one hour practice is really bad. But something that we did is I had gummies like little energy energy jam. Yeah, it's like the glucose gels. Yeah, we had glucose gels next to it. Because if you have too many fluids, with swimming, you can get nauseous, especially with it being juicing and eating granola bars before you, when something very hard tends not to work out very well to something that's like flexible with your stomach. So it's not like you're eating like a valley granola bar, and then you're going into pool and wanting to puke.

 

Amanda Terrell-Orr  16:03

Yeah, even some of the things that you're maybe not remembering because they just became so routine for us is suspending his pump. like two hours before practice making sure he didn't have any insulin on board keyword also, toward the end there where we were waiting for his body to adjust, he would have the equivalent of a meal, about an hour before practice with no insulin to cover it. And he would still getting into the water, those first bit of time would still go very low in a short period of time. So then he would have to sit out like he was saying, you know, have a lot of juice. And then he would be nauseous and not able to swim as well. What the doctor kept telling us is, you know, hang in there, we're going to figure this out, your body's going to adjust. And sure enough that ended up happening. But those are the kinds of things that we had to try in the early part of the season.

 

Stacey Simms  16:57

Sounds very familiar. My son's first wrestling practice freshman year of high school, he ate 85 uncovered carbs and still would not go above 70. Yeah, I was able.

 

Amanda Terrell-Orr  17:09

Yeah, the other thing that was really challenging that we had never experienced before, but we know that other people have since we reached out is overnight. Well, after practice, Ethan would have lows that would last for hours, no matter how many carbs we would give him. So then we would have to get to the point where we were micro dosing glucagon with the advice of his doctor in his circumstance to try to bring his blood sugar back up. But there were nights where my husband and I were up for four hours at a time just trying to get his blood sugar into a safe range. And this year, is the first time in all of those years, he's had diabetes, that we had to ask for emergency medical assistance for a very severe low. So it was a really, really difficult time. But what we like to think about that, and you know, he's very resilient, he got through that time. And you know, the type one community was really helpful in helping us come up with ways that we could try to address these big problems that we're facing.

 

Stacey Simms  18:14

So you brought up the state championships. Let's just jump into that now and talk about what happened and the basis of the lawsuit. And you know, what you hope to accomplish here, but start by telling me and Amanda, let me ask you what happened at the state championships.

 

Amanda Terrell-Orr  18:29

So the summary version of that, that I would say is that even had several events that day, they were all relay events, which means that he was competing as part of a small team of other swimmers. He had swam to those events. And the last event of the day would have been his final relay event swim. He was standing at the side of the pool with another student next to a referee, and the referee asked Ethan about what was on his arm. And so Ethan explained, of course, that it was a continuous glucose monitor that it measured his blood sugar that it was for type 1 diabetes, and that he had the patch over it to keep it on during swimming, which every athlete knows that everybody's body's different, but you are more likely to need extra cover over your CGM when you're sweating or swimming or that kind of thing. So the referee asked Ethan, who his coach was and who he swam for, and minutes before the event was scheduled to begin the referee address the coach. The coach told the referee all the same information that Ethan told him And in addition, said Ethan has an active 504 plan that allows him to have his medical equipment. The referee insisted that Ethan was in violation of what is commonly called the tape rule, which is essentially the fact that a swimmer can't wear something extra on their body to aid their speed boy The four body compression because those things could give the swimmer a competitive advantage. The coach tries to explain again everything that was going on. And that not one time in the 70s even swam prior to the state championship. Did any other referee believe that that rule applies even. It's always obvious in some of the videos that various news stations have used. You can see it on Ethan's are messy swimming. So clearly referees who are paying close attention to the swimmer to see whether their stroke is off or they're, you know, doing anything else that would be a violation saw this on his arm and no one said anything. So the referee was told that information as well. The referee insisted that in order to compete under that tape rule, he would have needed a doctor's note to say that it was medically necessary. The whole point of the rule is to prevent a swimmer from having a competitive advantage, you would not have to be someone who understood type 1 diabetes to look at what even had on his arm. And know that of course, it would not cause a competitive advantage. Of course, it was just medical tape covering up a medical device, the Dexcom G6  says on it what it is. And I timed it, it takes about 15 seconds on Google to figure out what that is. So if the referee did not believe the information he was getting, and the whole purpose of the doctor's note is to say, you know if needed, and so it doesn't give a competitive advantage. All of that together means that the referee heard all that information. And he either didn't believe it. Or he continued to believe that either was potentially cheating by wearing a foreign device or substance to aid his speed buoyancy or body compression. So at that time, the referee said that Ethan was not going to be allowed to swim. One of the important things that has happened in the news that I know the governing body is having trouble with is the use of the term disqualification. In my mind when the kid doesn't get to swim, the semantics of that don't matter. But it wasn't the fact that even swam in the meets in that final event and was disqualified, he was not allowed to swim the final or that. And so what the coach tells us happens from that point is that the referee says Ethan will not be able to swim, you were required to have this note, he's in violation of the tape roll. And so the referees scramble, because again, he's addressed minutes before the event starts and substitute another swimmer for Ethan. But what the coach told us is that in the rules, when you're going to substitute a swimmer, you have to go to, you know, like the administrative table and make that substitution in a particular kind of way. And so he was not able to do that in that time period. And the coach indicated to us that the relay team was subsequently disqualified for not having a proper substitution. Now, we learned for the first time when chafta issued their statement, that they are saying that the team was disqualified for an early start. And, you know, from our perspective, although it's really upsetting to us that the whole team would have been potentially disqualified on this substitution issue. The fact is, the crux of this is that Ethan was not allowed to swim, because someone incorrectly interpreted what he had on his body is potentially cheating and violation of the taping raw. That is essentially what happened in Ethan's case. And that just started all of the research and that kind of thing that our family did before we decided to engage a lawyer got it.

 

Stacey Simms  23:50

My question, I had a lot of questions. But one of my questions is, is it your belief, and I assume it is, since you're going to have with the lawsuit, that having a 504 plan, being covered by the American with Disabilities Act supersedes that tape rule.

 

Amanda Terrell-Orr  24:05

There are several points to what we're saying. So the first thing we're saying is the rule doesn't apply to even circumstance. And although the high school associations have not chosen to be this clear, the USA Swimming rules are very clear that taping for medical devices is not a violation of this taping rule is really about kt tape or therapeutic tape that would be used to support somebody muscles or joints or ligaments or tendons in a way that would give them a competitive advantage. Anybody who knows anything about swimming knows that when something protrudes from your body like a CGM, that it actually causes the disadvantage because we're talking about milliseconds of time and surface drag can actually make him slower. Additionally, we know the rule didn't apply because no other referee instead Prior meet even mentioned it as being possibly implicated by that rule. So let's say he even mistakenly believes that the rule applies, there are a couple things about that he did have a 504. We do think that's important, because the 504 says that he's able to have his medical devices at all times, in all school activities. Secondly, and I believe this is standard across the country, but even had to have a sports physical before he participated in sports that said that he was safe to participate in those sports. So there are lots of reasons that we believe the rule didn't apply. Even if it did, Ethan should have been fine without a specific doctor's note to prove he had type 1 diabetes. And further, the referee under the rules had the discretion to allow even to swim if he did not find that to be excessive. And he says, and he chose not to let even swim. So for all of those reasons, I think the way I described it to someone is there was a tortured reading of that rule to exclude a kid was type 1 diabetes isn't

 

Stacey Simms  26:13

how is your team reacted to all of this?

 

Ethan Orrr  26:15

Whoa, I didn't find out until I was literally walking to the blocks. My team was a little bit upset, but because they didn't know what was going on. At first, my friend, I was with one of my teammates. While that was happening, and he's like, going on well, the coaches talk or not the coach, the referees talking to me. And so I was walking to start the event, like I was walking around the pool, and they were like, Ethan, why aren't you sorry? I was like, What? What do you mean? And they're like, you're not swimming coach just said, Go talk to coach right now. We're starting to bet right now. Aren't we? Just like, yeah, go talk to coach right now. And we're gonna talk to him. And he was like, yeah, we're looking. I'm looking at the rulebook right now. And we're all looking at the rulebook really quick, but you're not able to swim. Because the CGM on time. And so everyone was like, why? because they didn't know it was forward. And the teammates that I was with is like, was it that coach, or, or the rapper or whatever? I was like, yeah, know what? He was like, yeah. I don't know what to tell you. I was like, Oh, okay. We were all upset about it. I was really dumb. Did

 

Stacey Simms  27:26

they support you? I mean, in these days in the time that has passed, tell me about that.

 

Ethan Orrr  27:32

Oh, yeah, no, they've always, I'm friends with everyone on the swim team.

 

Amanda Terrell-Orr  27:35

They're all super great. My coaches super great. The trainer for the cornado, the school that I stand for, is really great. My teammates are really supportive whenever I would have to get out, you know, they just, they'd make jokes, they'd be funny about it, like try and like lighten it up and whatever. They're really great. They're a really great team, they are really great team, I'm still going to swim for them this year, I'm still competing for I'm going to try and compete for state this year to this. I think the other thing, even in terms of the support even got, we we really can't say enough about this coach and the athletic trainer, it was a difficult season for them to of course, because of everything Ethan went through. So this happened, the state championship happened at the end of June, at the very beginning of July, the coach actually sent an email to chafa and laid out the situation of what occurred, asked if they would work with him, because he believed that what happened could potentially be a violation of even federal right. And I spoke with the coach kind of throughout that time. But at the end of July, I spoke with him more in depth and and I really wanted to know what kind of response he had received, he had received zero response to that email. So here we have a coach that's trying to act, you know, advocate for his student with diabetes and try to get something change. So this wouldn't happen again. And he received no response to that,

 

Stacey Simms  29:04

you know, Amanda, a lot of people are going to be really excited that you've done this and want to see this change and are rooting for you. But a lot of people are also going to be wondering why a lawsuit. There's just so much that happens to you all. When you file a lawsuit, you're going to get a lot of negative attention, you're going to get pushback, we file the lawsuit and what are you seeking in the lawsuit?

 

Amanda Terrell-Orr  29:26

So I'm glad that you raised that. That's one of the points that is confusing to people. We actually have not filed a lawsuit we filed a complaint with the Department of Justice alleging a civil rights violation. So that process is a different kind of process. That's not about monetary gain for anyone. That process is about the Department of Justice investigating whether or not there was a violation of even civil rights and if so, what kind of oversight is necessary over the governing body so that athletes with this abilities don't experience those kind of violation. So it's essentially a mechanism to enforce oversight and change, but not a mechanism whereby we would receive any funds whatsoever. Our lawyer is doing this pro bono. If we were to file a lawsuit, that would be a different circumstance. But it isn't our goal. To get money out of this situation, our goal has several parts to it, the main part of it is both the national and the state rules need to get with the times and make the kind of changes that USA Swimming has made. That makes it clear that taping of a medical device is not cheating. That is the primary thing that we need to see. I also truly believe that chafa in their rulemaking process needs to include the voice of athletes with disabilities, or people who have a lot of familiarity with those areas, I think that would help give voice to some of these areas where they clearly have not educated themselves. And I just think that voice is so important. So those are a couple of the main things that we're trying to get accomplished here. And, you know, in general, the governing body had the opportunity to say, we really care about this, we want to work with these folks to try to make change. We had one referee interpreted this way. This isn't what we believe as a system. But their statement, you can see, it's clear that they believe that discriminatory reading of that rule is the right reading of the rule. So we need some help from Department of Justice or other avenues to force the issue to get them to change. What kind of tape do you use? Do

 

Stacey Simms  31:45

you mind? I mean, you can share a brand name or just you know, because there's so many different overlays for the Dexcom. I'm curious what it looks like

 

Amanda Terrell-Orr  31:50

he was wearing the simpatch. Got it. And one of the things that I've been saying to people, if they're not swimmers, or athletes, they don't necessarily understand the difference between my kcca for therapeutic tape and Matt. But as you know, and as other people who use those overlay patches, now, that patch was specifically exclusively and obviously designed for that purpose. It has a perfect cut out just for made for the exact model of CGM that you have. And it's clearly obviously just holding that device on. So anyone who looks at the simpatch, or any other similar kind of patch, can easily understand what it's there to do. And not that and understand that it's not there to aid his speed, buoyancy or body compression, it can't do any of those things. And it's clear that it can't when you look at it,

 

Stacey Simms  32:45

he said you've said you're gonna start swimming again, you want to make it to the states again, why is this got to be very disruptive to you? This can't be a fun thing to be going through. Tell me why you like swimming.

 

Ethan Orrr  32:56

It's one of the hardest sports for you to be able to do. I really enjoy the individuality, but also how you work as a team. I mean, no matter what the points that you get for individually swimming, impact the entire team on in deciding if you win or lose the knee or event or competition, whatever, whatever composition, I really loved swimming, I've always loved swimming. But once I got diabetes, there's a we couldn't manage it properly without being safe. But nowadays I can. And I totally love to pursue it. I feel like it's great. It's great for the body. It's great. It's great in general, and just to get your mind off of whatever I mean, I think this is an amazing sport. And I'd love to pursue it. So even if we've had troubles, hopefully, we shouldn't have those same troubles. If the if we get the rule change that we need and want then I shouldn't have the problem, then I can swim and still compete. I don't hate chess or anything like that. I just want some real change. You know, before I let you go,

 

Stacey Simms  33:57

Amanda, let me ask you what I saw this story on social media. I feel like it's been in every diabetes Facebook group. Obviously it was local television and got picked up by national media. What's the response been like for you?

 

Amanda Terrell-Orr  34:08

What I want to focus on is the positive first because that is the overwhelming majority of response we've gotten. We've just received so much support. We've received support from jdrf. We've received some for support from Team Novo Nordisk we've received support we were contacted by Dexcom. So all of those are good, but also the heartfelt messages that we've received from other parents of athletes with type one have been moving and have really helped support us through a time where we're getting the kind of attention that we did not expect from this. We expected that we would file something that our lawyer would do a press release and a couple of local channels would be interested. And then we would just wait and see what happens. This has been way more of a response than we expected and the back much Already in that response has been positive and supportive. But as we know, in the public domain, there are always people who don't think about the consequences of what they say on real people. And they come after, you know, a 16 year old in their comments. And so early on, our lawyer told us don't read the comments. And that was really great advice. So now, we basically just engaged with people who have commented on, you know, like a diabetes, Facebook post, or some other kind of social, that's from folks who understand that better. And, you know, we've kind of asked those people who are supporting us, if they're reading the comments, they can address those issues, they can address people who are trolling us. And that would be really helpful to us, because we just can't be beat up that way. But I also think chaffles response was very disappointing to us. And it felt like they were minimizing denying and blaming. And they had the opportunity to look at this much differently in a way that was geared toward change that could allow student participation. And they chose not to do that. It felt like backlash to us that they chose to respond in that way. But by and large, boy, we really appreciate all the support we're getting, it's really the fuel that keeps us going. Because this is hard, it's really hard to be in the spotlight this way, and even made this choice themselves about whether we were going to do this after a lot of research. And so it's wonderful when people support him and say, Thank you, Ethan, for doing this, and lift him up around his struggle. That is just been wonderful.

 

Stacey Simms  36:44

He's gonna let you have the last word here. When you hear your mom say all this stuff, like what's going through your head? Did you think it would get to this point where it's not nationwide?

 

Ethan Orrr  36:53

Honestly, no, I was surprised that it got really big, really quick. I was not expecting that at all. So I'm really happy that that people are supporting it.

 

Stacey Simms  37:06

Well, thank you so much for joining me, keep us posted. love to know how this moves forward and plays out. But thanks for explaining. And, you know, we wish you all the best. Thank you both.

 

Amanda Terrell-Orr  37:16

Thank you so much for having us.

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  37:30

More information at Diabetes connections.com. I'm gonna link up some of the stories about Ethan that some of you may have already seen most, we're gonna try to link up some follow up as the story progresses, because we're really just at the beginning here, you know, I'm going to follow through this complaint with the Department of Justice, see what the rule changes are like if they come through and see if other clubs and athletic associations follow suit, or do anything that is proactive. If you find something in your local community, let me know if there's a rule change because of this, or I gotta tell you, we've already talked to the coach about Benny's wrestling, and you know how he wears his equipment. I'm double checking, I just want to make sure that we're all good, because while he has been fine so far, and last year, we saw a ref wearing a T slim pump at a couple of the meats. I didn't go over. But Benny did go over after the meets and just say hello, when you just showed us pump and that kind of thing. But even if the ref has type one and wears a pump, you know, there still may be a misunderstanding of the rules. So I I'm definitely double checking all of that, to make sure that we're not gonna have any issues this year. It's complicated.

I gotta tell you that my favorite part of the whole story is how Ethan's teammates have hung with him. Right. And they haven't made him feel different. They haven't made him feel like he's to blame for things. We've been so lucky with Benny that he's surrounded with people who support him as well. And if you heard the episode he was on a couple weeks ago. He says part of that is because he just doesn't want to be with people who don't support them. And we're really, really lucky that he feels that way. So Ethan is lucky as well. But Big thanks to Ethan and Amanda for coming on so quickly and sharing this story and making some time for me.

All right, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since he was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions you can share with up to 10 people from your smart device. The G6  has 10 day sensor wear and the applicator is so easy. I haven't done one insertion since we got it Ben he does them all himself. He's a busy kid and knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course we still love the alerts and alarms so that we can set them how we want if your glucose alerts and readings from the G6  do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

If you are listening to this episode as it goes live on September 7, then I wish you a very happy new year. It is the Jewish holiday of Rosh Hashanah. And as you probably know, these podcast episodes are taped and scheduled in advance. So I am not working today I am celebrating the new year with friends and family. And I don't mind sharing that. We always go to our same friend's house. I don't have any family locally here in the Charlotte, North Carolina area. And our friends this year, were probably having like 20 to 30 people, they bought COVID tests for everybody those over the counter COVID test as I'm taping, I haven't taken it yet. When you're listening to this, I will have taken it. But I thought that was really interesting. We're all vaccinated this group we've gotten together before earlier in the summer, it was actually the first group of people that I got together with in Gosh, I want to say maybe late May, you know, we'd all been vaccinated, but he's really excited. Nobody knew Delta was coming. And so we know we're all reacting to this in different ways. I'm really, I guess the word is interested that this is going on. I wonder how many other people are doing this for small private gatherings. I'm excited to be celebrating and may it be a sweet and happy new here because my goodness, we definitely need it. So I'm gonna leave it there.

Big thanks to my editor John Bukenas from audio editing solutions for really jumping in here. We put this together much more quickly than our usual episodes. So thanks so much as always, John, and thank you so much for listening. I'm Stacey Simms. I'll see you back here on Wednesday for in the news. That'll be Wednesday live on Facebook at 430 Eastern Time, and then we turn that into a podcast episode for Friday. Alright, until then, be kind to yourself.

 

Benny  41:35

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