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66: Sturge Weber Dad- Evan C. (Full Transcript)

Updated: Mar 6


Jey (00:03.112)

Welcome into another episode of the Young Dad Podcast. I'm your host, Jay. It's a pleasure to be with you again for episode 63 of the podcast. We are getting so close to overall episode number 100. We're about five or six away in total between bonuses and mainstream episodes. So that's super exciting. We have a really cool guest coming on for episode total 100. So I'll tease that out now. He's really, really close to me.

He looks a little bit like me. He sounds a little bit like me. It's not my brother. It's someone that had me when I was really young, technically, he was young too. So just think about that, try to put those dots together. But I am joined today by, first of all, a great friend and someone that you guys haven't heard his lovely voice since December 18th, 2022, which is

Bonkers we thought has been a lot more recent than that, but we have a year to catch up on We have Just so much. Of course, we've stayed in touch. We've talked back and forth over the last year, but it's my good friend Evan He was back on episode 11 of the show. So when the show was a lot different So if you've been one of our longtime listeners since then, of course, thank you so much We appreciate that So yeah

Evan, welcome in. If the people don't remember you from last time, let me see if I can get you some greetings here. Your princess has a rare condition, an uncommon condition called Sturge-Weber syndrome. You're joining us from Down Under, down in Australia. Last time you were on, we talked about spiders, tarantulas, pizzas, soccer, rugby.

Jey (01:59.684)

which is some of the things we talked very deeply about. Sturge Webber, you brought some great awareness to what it is, made me more aware of what it is, made our listeners more aware, so that was great. I think that was.

That was a lot of it. You took us through your whole life journey pretty much. We'll probably do that again a little bit. The ups and downs, the good, the evil, the bad, the ugly. You're a husband, you're a father, you're a pretty damn cool dude, and you love America more than Australia, last time I heard. So, all jokes aside, Evan, thanks for being back on with us.

And I say that because you do like pineapple on pizza because that's a tragedy, unless you finally changed and grown up. But how's it going, man? Tell us about you, tell us about your life. Introduce yourself once again for the people.

evan corbett (03:05.61)

Yeah, G'day Jay and all the listeners out there. Thanks for having us back on. You sort of put me on the thing there saying that I like the Yang tanks over Australia. I don't know about that one buddy, especially if you take into consideration the differences of annual leave. But... Thanks again for having us on. It has been a while. I've got to admit I was shocked.

Jey (03:24.784)

No, I like I'll show you more too.

evan corbett (03:33.954)

when we realize it's been well over a year since I was on, because like you said, it felt like it was about six, eight months ago. That's amazing how much things occur in such a short period of time to really blow out the time periods, you know? Yeah, there's, I mean, the more things change, the more they stay the same, to be honest with you. I've still got my beautiful little princess with us. She's...

Jey (03:58.853)

You're true.

evan corbett (04:02.254)

She's 5 now, she's going on 16 with her attitude. She ended up getting a... I bought her a new surfboard, well, a surfboard for her 5th birthday and absolutely loved it until we took her to the beach that one time and all she wanted to do was sit on it and dig a hole. So that was... That was really interesting. Definitely not the way that I first envisioned it but that's the thing, you're...

You always make a plan in your mind how something's going to go ahead and then when it doesn't go that way you just got to roll with it

Jey (04:38.453)

No, super true.

evan corbett (04:38.554)

As for uh, as for as for the pineapple on the pizza look dude It has to remain. It's got to be it's a core ingredient to a fire fantastic pizza You know like you get roast chicken BBQ sauce Spanish onion fresh pineapple you get that's That fresh juiciness on there Just to break it up

Jey (05:00.668)

What's a Spanish onion? Now I'm more concerned what the Spanish onion is.

evan corbett (05:05.194)

Red onion.

Jey (05:07.076)

Oh, okay. That's what I thought, but I'm like, I've never heard it called a Spanish onion. What?

evan corbett (05:09.112)

Red onion

evan corbett (05:14.742)

Or do you know what they call a Spanish onion in Spain?

Jey (05:15.748)

Okay.

Jey (05:19.181)

An onion.

evan corbett (05:21.762)

That's it, it's just an onion.

Jey (05:23.376)

Okay. I was like, is that a trick question? But no, you're so right. I mean, the more things change, the more they stay the same. I mean, overall, things are, things are still things, right? Same wife, same kid. She's just a little bit older now. My kids are older. I mean, 2022, I mean, in December of 2022, I had a two year old barely. And I had a

Bye!

five going on six year old. But you know, it's the same, you know, the younger, the girls are right around that age. I say three is when they start to go into their three major years, four major, five major, six major, so it starts early. That attitude being a girl dad, it starts and it won't let up. It's only gonna get, not worse. You'll learn it, you'll understand a little bit more, but yeah, buckle up.

evan corbett (06:17.883)

Oh.

evan corbett (06:27.546)

I can definitely believe that she's starting to show a lot more traits of her mother. Thankfully she's at the other side of the house. I can hear her. She's way down there so she won't be able to hear that. She's very stubborn, very opinionated, very bossy, very cute, very sweet, huge heart.

Jey (06:34.512)

Be careful, your mom's around, so we don't want to say that too loud.

Jey (06:41.676)

Okay, then we're good. And okay, we're good, we're safe.

evan corbett (06:58.438)

Um, can flip off the handle at a moment's notice. So, oh, and then there's my daughter. So

Jey (07:08.298)

No, it's so true with the girls this age. The thing is, the way it gets worse is that they get smarter. So they get smarter so they're able to know how to work the system in just ever so slightly different ways. So they pick up on new things, new tactics, new abilities.

They get smarter, more intelligent, more emotionally intelligent. And so that's how it gets worse, is that it just gets easier for them. It gets harder for us, but easier for them.

evan corbett (07:41.579)

Yeah.

evan corbett (07:45.182)

Adi is going to... Definitely, well Adi is going to prep at the moment. So it's like a... It's sort of like a transition school before they go into kindergarten. And she's going to a... Like a private Christian school. And it's very interesting the new little tips and tricks she's coming home with that she's playing.

that she's using against me or against me, her mother. So I'm like, oh, she's picking things up from the other kids right on. Okay. Happy days. I've got a school kid now or soon to be anyway, when she gets through it and I'll have to learn her homework before she gets it so I can help her with, which I've got to admit, I'm kind of looking forward to it.

Jey (08:16.648)

Mm-hmm.

Jey (08:38.82)

No, homework's a lot of fun. It's real simple for the first couple years so far. I'm a couple years ahead of you. That where she's at in America would be called Head Start or pre-K kind of thing to where she's kind of just more socializing, engaging, not too many educational expectations and whatnot. And then at least kindergarten here.

They transition into, kindergartners are definitely treated very, very differently than the rest of the kids at school kind of thing. They really coddle the kindergartners to make sure that they adjust to kindergarten. They adjust to school, they adjust to routine. So it's very, very coddled still. Snup, nothing's really pushed too hard. At least here, they're given like packets of homework. They're given...

Their homework is very simple, it's more sight words, learning. The educational expectations aren't too high, especially for kids, because kids now, at least they're coming from all different walks, fast forward, take it back as four years ago and the kids going into kindergarten more than likely had a kind of a headstart or preschool or pre-K kindergarten, first grade kind of thing. And so they had more like

school system involvement from a younger age, I like two, three kind of thing. COVID happens, it throws all that off because daycare shut down, kids are just at home learning from, if they're learning at all, learning from siblings and TV and parents and whatnot. There's no like traditional school structure. That structure doesn't go back in place until these kids are now three, four years old. They maybe get a year of that versus while they were getting maybe two or three.

prior to kindergarten. So now kids are coming in just all over the place.

evan corbett (10:38.903)

It's...

It is, yeah, it's same but different here. So we have, we have like preschool, which is sort of like just a daycare where the kids just go, go these places. It's subsidized by the government, so it doesn't cost parents too much to go there. They finger paint. They just, you know, dick around, have food. Whereas some private schools have like, yeah, prep, which is sort of like a mini kindergarten.

Jey (11:03.601)

Yep.

evan corbett (11:10.858)

where they're doing the routines, the learnings and whatnot. I'm not sure if the public schools do it, but the private and the semi-private, obviously you have to pay for that luxury. So I actually had a bit of a heart attack to be honest when at his school, Rangers

Jey (11:28.072)

Mmm.

evan corbett (11:36.814)

from $7000 to I think $10,000 per year.

And I thought that the $7,000 actually started in year 7, so it was like $1,000 a year. Boy was I wrong. It's actually $7,000 for kindergarten and it slowly ramps up to about I think $10,000, $11,000 when they hit year 12. So yeah, fun times.

Jey (11:44.732)

That's crazy.

Jey (12:05.884)

Hey, super fun.

evan corbett (12:09.114)

Yeah Well at least with this school they do They really look out for like the special kids, you know, they'll do Because they're private they can sort of like run to their own curriculum in to a degree So they can set up individual educational programs for special kids who might will be lagging that kind of thing So that was one of the big draws of sending. Yeah, it was a big draw of sending Addie to a

Jey (12:18.311)

Yeah.

Jey (12:30.851)

That makes sense.

Jey (12:39.28)

Definitely. Now, I don't know if we covered it last time, but with her and with her Sturgeweber in anything, has her, and I know she's made just amazing progress since we last spoke. I kept up on it. You see me message you, damn near every time you put up something about her. I'm such a fan of that little girl. Like she is just, she's amazing. Everything that she's done. But with her and how...

evan corbett (12:57.579)

Right.

Jey (13:08.896)

Does it affect her cognition or developmentally? Or does it give her additional special needs or limitations when it comes to learning and education? Or even limit her social skills at all? Most people are probably thinking, if they're listening right this moment, they're probably thinking, well, Sturg Weber, is she also on the spectrum? Kind of where?

evan corbett (13:27.183)

and the winner is...

Jey (13:35.424)

Where is that the same but also different more specifically for her and other kids that may have search whatever?

evan corbett (13:42.21)

She she it's all of the above unfortunately So there is there is learning difficulties it does take her a while to get her head around Situations and she can very quick to frustration You got to think with her disability. It's degenerative. So she's essentially only got half a brain The right side of her

The left side of her brain is slowly getting starved of oxygen and blood flow so it's slowly dying off And it takes that a little bit longer for the other side of the brain to pick up those sets of skills So that's why we've actually had to delay her from starting kindergarten. She's actually going to start kindergarten a year later

evan corbett (14:31.498)

The other things is that she will... um... like socially it's... it's not too bad, she's very happy to try and make friends and what not.

evan corbett (14:57.774)

So it's like when she tries to play with her friends, she will try and set out a way how to play, communicate. But because she's got a speech disability, she thinks that she is saying the play plan perfectly. You know, let's do this, let's do that. But the kids don't fully understand it because she can't get the words out correctly.

So they won't know what to do, also they'll just run off and then she'll get really upset.

Jey (15:25.)

Mm.

evan corbett (15:30.966)

Um, she's only now able to write the letter A and D, but even then it's really sketchy because she struggles to hold a pen. Her eyesight's definitely improved. She was actually blind over Christmas after we spoke. I think the uh the 22...

Jey (15:40.027)

Okay.

Jey (15:55.728)

Mm.

evan corbett (15:59.394)

Yeah, the 22 Christmas we had a failed surgery and it ended up causing a detached retina. So she was blind over Christmas and it took quite a lot of fighting with the surgeons and the doctors for them to do an experimental surgery. I think in February last year for them to try and reattach that retina. So she got a vision back.

Jey (16:03.72)

Mm-hmm.

evan corbett (16:27.231)

She ended up having a stint putting her rider relieve the pressure from her glaucoma caused by the Sturge Webber

Jey (16:34.824)

Mm-hmm.

evan corbett (16:35.614)

And ever since then, actually her reading, well she can't really, she can't differentiate the letters, but she can try and read now, she can see a lot better. So that was a, that was actually a big positive.

Jey (16:46.908)

So the experimental surgery was kind of a success then.

evan corbett (16:52.826)

to reattach it but it could have gone really bad. So with her actually having better eyesight now that has definitely improved her learning at school. She does get a little bit shy and people still stare at her face. We actually went, I almost got into a massive fight at a grocery store. We went to a grocery store.

Jey (16:55.896)

Yeah.

Jey (17:11.089)

Mm-hmm.

evan corbett (17:20.63)

We went on a holiday this year actually, with the Ronald McDonald Foundation. So Maccas has a child's foundation here in Australia. I'm not sure if they have it over in the States where they support a whole lot of you know, sick kids and we've got, and they've got holiday homes. Oh, school. And so we ended up going to one of their holiday homes up on the north coast. And we're, we'd been, we'd spent all day at the beach and

Jey (17:27.694)

Mm-hmm.

Jey (17:31.517)

Mm-hmm.

Jey (17:36.24)

Yep, yep, they're the same thing here.

evan corbett (17:48.926)

You know, so she was a bit tired and her eye was really red. You know, as much as they can do laser surgery on her face, they can't go near the eye. So her eyelids very, very red. And we're walking through the supermarket and this bloke, this fucking bum who works there, who actually had facial tattoos himself, you know, obviously didn't have a nice life, was stuck on the shelf and he...

Jey (17:59.216)

Hmm.

evan corbett (18:14.61)

saw my daughter and he goes oh wow look at you you're like a little monster with your face paint. Thankfully Addy didn't think anything of it she was like no I got my pink milk blah I've looked at him and I could have fucking killed him because as much as she's aware that she looks different she's not fully aware how different she is and so we're trying to keep up that positivity we have her talking to

Jey (18:36.7)

Mm-hmm.

evan corbett (18:44.622)

try actually building up a relationship with the psych so when she gets that little bit older she'll be able to talk to it and regulate feelings and emotions but yeah other than that she's going she's gone pretty good the thing with Sturge Weber is it affects everyone differently like their brain it affects every brain differently you know like some poor kids you know their vegetables

Jey (18:50.129)

Okay.

Jey (18:55.441)

Definitely.

evan corbett (19:14.542)

Canada actually that's like a PhD she's you know she's a lawyer some fancy lawyer with PhD you know so it's the band the band is it's just it's so ranging for these kids unfortunately

Jey (19:32.569)

No, that's very true. So my ex and I, so my kid's mom, we actually just came to an agreement for my older daughter who's sick to actually get her into therapy. So by the time she cut, this comes out.

She'll have gone through at least two, maybe three therapy appointments, uh, just to give her that outlet, just because it's so needed. And it was probably one of the really harder things like to swallow. Like, yes, I work in mental health. I'm a mental health clinician, professional in the field, master's degree in psychology and all that fun stuff. But when it comes to your own kid, like sometimes you're just even lost. Cause it's like, I am the professional in this field, but

there's no way I can even work with her because that's me. I don't work with me. I have other people work with me for me. And so it was probably one of the harder things to do is to come to that, not realization, I knew it was needed, but actually doing it, it was like, wow, I can definitely empathize a lot differently now with other parents that I work with.

different clientele is like, I get it, I get it now. So it's definitely.

evan corbett (20:48.982)

Well a mechanic doesn't work on his own car because he's got an emotional connection to that car. So someone else will come through and look at it and say, your shocks are shot or you got a hole in your exhaust. And he's like, no, it's good, it's good. As a parent, you won't necessarily see all the, I won't say red flags, but all the tipping points that another professional, a third party would see.

because you're emotionally invested, you know, yeah. Yeah, oh, big time.

Jey (21:18.748)

in the outside perspective. Your bias. Yeah, your bias invested. So kind of a weird question.

evan corbett (21:25.994)

You know, there was one thing, I was going to say one thing that we noticed, like the third party buy-in thing, was that Addie likes to have sort of like downward grounding pressure. So when she's sleeping, she'll lash out with her feet, she'll kick, she'll try and find you with the foot and then she'll push against it. When she's sitting on the ground, she'll sit in a particular way so that there's pressure forcing down on the ground.

And after we spoke with Kate, her shrink, she's like, no, she has this and as you know, some fancy word, you know, well, I hit things with a hammer for a living. So, so we end up getting her. Well, sorry, Santa got her a weighted blanket for bedtime. Next thing you know, she's having some of the best sleeps of a life because she has that downward pressure on her all the time, but we can see it. We had no idea.

Jey (22:15.766)

Smart.

Jey (22:19.492)

Makes sense.

Jey (22:23.361)

Yeah.

evan corbett (22:24.974)

because we're like, oh, she's just kicking. So sometimes it makes sense.

Jey (22:27.768)

Yeah, like you telling me that with the way she sits, 100%. Like that sounds like it's a sensory processing disorder kind of thing. Lining up there, but it makes...

Jey (22:44.376)

There she is! Hi there!

Jey (22:52.784)

Hi, Addy. How are you? It's so good to meet you.

evan corbett (22:53.938)

Say hello.

Jey (23:01.72)

Good. You're having a good day.

evan corbett (23:05.602)

You can look at the camera.

Jey (23:07.94)

Hi.

evan corbett (23:10.454)

Ailer and Eve are coming today. Your friends Ailer and Eve are coming today. And them, them having the swim in my pool.

Jey (23:15.077)

You did what today?

Jey (23:22.465)

What? You're gonna hang out with them in your pool?

evan corbett (23:23.342)

They're gonna have us.

Jey (23:27.088)

That's awesome. Do I sound different than the people you know?

evan corbett (23:32.398)

James He, yeah All right, i'm gonna keep talking to Jane here. Okay. I love you

Jey (23:32.796)

Do I talk funny? Yeah.

Jey (23:38.044)

a little bit.

Jey (23:43.669)

It was nice meeting you, Addy.

evan corbett (23:44.207)

Yeah baby.

evan corbett (23:48.982)

for daddies. I'm gonna go find a yoghurt or something. Sorry about that mate, I knew she'd find me one sooner or later.

Jey (23:57.981)

I knew I was waiting for it, but it's so, but yeah, I got to have that. Sometimes you need that third party perspective, you know, you need that different perspective. You need someone else objective.

evan corbett (24:09.75)

Yeah, I- I fully-

I fully believe in just having a third party come in, essentially with anything, a fresh set of eyes to give you a new perspective, to see what you're not seeing. But you can do that with anything. You're painting a wall, you're working on your car, you're gardening. Think of marriage counselling as well, relationship counselling. A third party just coming and going, hey, you know...

Jey (24:40.701)

Mm-hmm.

evan corbett (24:46.035)

Maybe you should do a little bit more maybe she should do a bit more just to refresh it as long as it all comes from a place of love of course.

Jey (24:53.16)

Exactly. It's all about the intention behind it and then also acknowledging that intention. But my question for you, so with all of the vast technology that's come out in the last year or two, AI and just all the tech that just keeps coming out, keeps coming out, keeps coming out, is there ever a thought for you with this kind of being on the horizon in the next five to 20 years?

evan corbett (24:58.1)

Mm.

Jey (25:25.089)

Any thoughts, maybe you haven't thought about it, but any thoughts for her to be, to have any like artificial intelligence, like working with her, like within her own brain in her head or doing any of those kind of things. For her to kind of be on that same playing field as other kids, artificial brain intelligence, anything like that being given to her, putting in her kind of thing.

evan corbett (25:54.582)

All we ever do, my partner and I, is think about her future and what's going to come up. Like we had an appointment with her neurologist, a neurosurgeon, maybe about four months ago, five months ago. And we were talking about different things and AI, not so much, more of some kind of drug that might be able to, sort of like aspirin, right?

Aspirin she has aspirin to thin out the blood to try and minimize any kind of strokes or calcification in her brain. So by diluting the blood making the thinner.

Jey (26:33.49)

Mm-hmm.

evan corbett (26:39.958)

potentially there could be some kind of drug in the future that's delivered similar to aspirin that might be able to open up the crushed blood vessels in her brain to allow proper blood flow, to fully supply that brain to minimise its starving. We definitely think of that. There's no talk about it though.

Jey (27:06.474)

Definitely.

evan corbett (27:10.398)

Unfortunately, Sturge-Weber is because it's been so rare, does not get a lot of funding for medicals. You look at everything that they give her now, her epilepsy drug, that will send from epilepsy, the drops, the surgery. That's called Lichoma. That's not Sturge-Weber.

Jey (27:18.844)

Mm-mm.

Jey (27:24.209)

Yeah.

evan corbett (27:37.314)

The, the, all these issues are by products to search web. Yeah.

Jey (27:38.236)

They're treating everything else exactly. They're treating all the other things that are the symptoms and side effects of the main thing, yet not treating the main thing. So while the main thing goes untreated, how much progress can truly be made kind of thing.

evan corbett (27:56.514)

Exactly, but there's also there's no money in it. I am as this is gonna say on this is gonna sound really fucked up but Drug companies pharmaceuticals governments everything like that. They make so much more money off of like cancer treatments for AIDS all that kind of stuff Because a lot a lot of people get it You know, is it in their best interest really to cure cancer? Yeah, this is like silly conspiracy crap, but

Jey (28:00.251)

Mm-hmm.

Jey (28:12.864)

Oh, yeah. That's the whole point.

Jey (28:21.416)

We

evan corbett (28:26.258)

Is it in their best interest to cure cancer? Not really, not financially, but because a lot of people get it.

Jey (28:29.42)

No. And it's not even, it's not even conspiracy.

evan corbett (28:34.766)

Because a lot of people get it, it gets more funding. But with SturgeWeber, like the rarity of this, there's really not a lot of money. There's not a lot of private money even going into research because not a lot of people get it. So we just have to, yeah, we just have to wait and see that maybe that a...

Jey (28:50.728)

Mm-hmm.

Jey (28:53.886)

and not a lot of people have it.

evan corbett (29:03.762)

Not so much a side effect, but like if they develop a drug for something else, it might be able to be utilized for a surge wearer kit You know like aspirin you know so And so like and the glaucoma drops You know open it opening up the blood vessels in the eye to allow drainage to keep that pressure down Similar to what's happening in the brain, but obviously you can't put eye drops in the brain so we just have to wait and see and yeah, we

Jey (29:12.177)

Mm-hmm.

evan corbett (29:33.878)

Well, my missus, she's an atheist, but yeah, I definitely fucking think and pray about it every single day. You know, how will she be when she's 60? You know, I won't be there to protect her. So, it's always on our minds.

Jey (29:39.976)

100%. I mean.

Jey (29:51.256)

No, 100%. I agree with that. Before we had even talked the very first time, it was something I had never heard of, which I had been in a similar boat my entire life. So when I was growing up, my legs would hurt a lot. And it wasn't just growing pains. I physically couldn't get out of bed because of this neuromuscular...

disease that I have from my dad. My dad has it, my dad's dad had it kind of thing. It runs in the mail genetics. And so, it's what's called Anderson-Twell syndrome, but you just can't tell another seven-year-old on the playground you're running funny because you have this complicated muscle muscular disease kind of thing. You can't just tell a staff member at school that you're a little bit different.

and run different, when you look completely normal to them and tell them, well, I have this thing that I can't walk the same, I can't run the same, I can't run as fast because my muscles don't work the same as your muscles kind of thing. And so that's super hard to explain to people. And then even going to doctor's offices, you're like, oh, I never heard of that. So it's that same similar kind of boat words like.

If more people don't have it or more that there's not someone with enough money to go and do the independent and fund their own research on it for people, then it'll never happen kind of thing. Because a doctor's not going to go out of their way away from their, you know, cut and cloth of knowing like, hey, I know, I know this thing, but I only know.

evan corbett (31:23.211)

Nice spot on.

Jey (31:37.276)

three paragraphs that I can Google on my own medical research kind of journal about it. And that's pretty much all the knowledge I can give you or information I can give you on it. It's like, cool. So you're just like everyone else. And none of them want to go against like their cut and cloth common core medicine and practice because they don't want to be on the outside looking in. They don't want to be on the outside of making the maximum money or anything like that. They don't want to lose out on that potential for earning.

Because if they just play it safe, they go with the system, they go with everybody else, then they'll be great. They'll be fine, they'll have a great life, lucrative career, they'll be great. They don't wanna step out on their own. But the thing is with the system, and I'll be having a doctor on soon to kinda talk about this even more in depth, but he was doing, he's a doctor, he's a PT, physical therapist, and so.

in his work and his practice and everything, he wasn't able to, he wanted to start meeting more and more people up the line. He wanted to meet people further before they got hurt. Preventing preventative medicine is taboo. So preventative medicine isn't a thing. It's taboo. If you practice preventative medicine, like you are the black sheep.

of the medical community here in America at least. Because it's not about preventing, it's about prescribing. It's about prescribing treatment. It's about making money because preventing it means that there's less money coming down the line. There's less money to be made if you prevent the disease.

evan corbett (33:12.947)

It's making money.

evan corbett (33:21.558)

Yeah, well hospitals...

Hospitals get funded by the For research and all that because of the return You're not going to invest in something if you're not going to get a financial return from it so We certain diseases, especially the smaller ones. There's not a lot of return as like You cure Sturge Weber Like as awesome as that would be you don't you're not gonna get any money from it. I mean you could charge

Jey (33:38.437)

Exactly.

Jey (33:52.049)

Mm-mm.

evan corbett (33:53.654)

the drug $100,000 of course not many surge Weber parents are going to be able to pay will be able to afford that but there will be a couple but the amount of money that would need to be put into it to find that cure would cost millions like tens if not hundreds of millions of dollars because it's not fully understood so there's no financial return on it so why do it which is f**k

Jey (34:22.)

Exactly. When there's they have the cure for cancer. I mean, let's all admit it, even if you're a conspiracy theorist or not, like they have the cures, they have the resources. I've seen too many doctors, too many things, too many reputable sources. Just with my own eyes, looking at these own medical studies and whatnot, they have the cure. They 100000 percent have the cure.

And the thing is, is that they're going to tell us we don't have, they don't have the cure because it's still being researched and developed and whatnot. And this is the only way that we can treat it, which is bull because they have alternative medicine reasons that treat it just the same. It have very little, if any chance of actually the cancer coming back. The cancer comes back so often, usually comes back worse. It comes back harder.

Or it takes just years upon years upon years in some cases to actually get through to remission, to beat the cancer, to get rid of the cancer or anything like that. Radiation, chemo, kidney problems with dialysis or whatever it is. It's not that we don't have the answers, it's just the answers that we're given are the ones that they want to give us because those are the ones that make them the most money.

And there's no conspiracy behind it. It's fact. It's fact you go to the doctor. What do they do? They spend six minutes with you At least here in america, they spend six minutes with you throw you a drug and send you out the door Like that's it they Six minutes write your prescription and you're out the door and you get better temporarily but more often than not what happens You get sick again So where are you back again? at the doctors

evan corbett (35:59.787)

Yeah, I agree with that.

Jey (36:13.)

Same issue, maybe a little bit different. They write you another prescription, another antibiotic that's gonna tear up your system, destroy your system, make you less healthy and more susceptible again. And they're gonna write you something else. Prince and repeat. It's the same thing. Like I get asked all the time, why don't you go to the doctor? Like, why? I could go to freaking Walmart and go get some Tylenol or some medicine or whatever for 10 bucks.

and I'll be fine in a couple days kind of thing. I'll just eat right maybe I'll take a couple more scoops of my greens or whatever I need to do to supplement to feel a little bit better but I'm not it's not going to prevent me from life because it's not it's not anything I need to go to a doctor about not if it was broke a broken bone or something torn or something I knew was 100

evan corbett (37:00.447)

No.

Jey (37:09.988)

then I'll go to a doctor because I absolutely have to go to a doctor for that kind of thing. Something I can't do on my own.

evan corbett (37:19.423)

When I get sick, if it's like some kind of cold or cough or whatever, I go straight to the bottle shop, get myself a good bottle of scotch, and just sweat that bastard out.

Jey (37:27.129)

Yeah.

Jey (37:32.632)

No, exactly. And that's really what you kind of have to do. I mean, heck, my voice is a little bit raspy now. This is the best it sounded for over a week. I finally kicked the cough. But, you know, at the worst of it, I was like, well, I'm not going to go to the doctor. Like, I'm just going to take some honey. I'll take some emergency vitamin C just to put the right things in my system, to give my system a little bit more.

firepower to fight off whatever's going on, some honey, some lemon water. I'll be fine. I'll drink some tea. Like, and I'll just deal with it. I'll just deal.

Couple tequila shots here and there. I burned it off though. Yeah, same. That's it.

evan corbett (38:15.486)

Now you're talking. We actually had that going on Christmas. We had Christmas tequila shots.

Jey (38:25.068)

Yep. Yeah, we had some. Yeah. But I mean, that's kind of what it is. You treat it yourself because you know, it's going to work and you know, it's going to be more cost effective, time effective. Then just why waste your time going to a doctor when all they're going to do and you know exactly what they're going to do. They're going to spend six minutes with you and write you a prescription and they're going to say, have a nice day. Next. Next, please.

evan corbett (38:54.89)

Yeah, no, absolutely agree with you on that one, mate.

Jey (38:55.672)

They just made hundreds of dollars off that prescription. They just made $100 off you being in there, running your insurance, billing for those six minutes. That they're gonna bill an hour, hour and a half because of your wait time. And then they're gonna make hundreds of dollars up, hundreds if not thousands of dollars off that prescription they just gave you.

at your expense when you could have just gone to Walmart and spent $10, gotten some Tylenol or some cough medicine and slept it off for a day, maybe missed a day of work so you lose what, $100, $150? Versus

evan corbett (39:31.198)

No, well, yeah, depends where you're at. We get sick leave, so we get paid regardless.

Jey (39:37.496)

No, of course most people in America, I mean not all but a majority have a sick day that they can take and burn So they're not losing any money. So really they're out net negative ten dollars versus Hundreds it's not maybe even thousands in some cases depending on The doctor you get on the other side and how much they're trying to line their pockets with so

evan corbett (39:51.668)

Mmm.

evan corbett (39:59.106)

Well, I actually go to work when I'm sick, to be honest with you. I try and keep my sick days for when I'm well and just want to have a day off and not use any of my annual leave days. Although, also a lot of my sick leave is actually taken up by, it gets classified as carers leave, you know, at his appointments. Like we're going to the hospital or different appointments, maybe.

Jey (40:02.77)

The same.

Jey (40:08.304)

Yeah. No.

Jey (40:22.186)

Yeah.

evan corbett (40:27.086)

It's actually started to taper off, but at least maybe once every six weeks we might be going somewhere. You know, the brain rehab clinic, the eye clinic, neurologists, one therapist that wasn't able to go to a school so we got to catch up. Or I just use it as an excuse and pull her out of school and then take her to the beach, to a carnival. Just for some little fucking daddy daughter day. Just to remind her, hey, life is fun, let's have some fun.

Jey (40:51.91)

Mm-hmm.

evan corbett (40:55.646)

and then get in trouble with the missus later for not taking her.

Jey (40:55.688)

Exactly.

Jey (40:59.648)

As for forgiveness, not for permission. Not old.

evan corbett (41:03.596)

Mate, you know what, I used to believe that but then there are some things that I've done or purchased so to speak where I really should have asked for permission because forgiveness did not come.

Jey (41:17.488)

Is that how you got the two motorbikes?

evan corbett (41:21.078)

Well, one of them is hers, but the paint job on mine... You've seen it on my Facebook, but... Yeah, I probably should have asked permission for that one because that was a big expense.

Jey (41:28.58)

Yeah, I've seen it. It's sick.

Jey (41:36.517)

Oh.

Yeah, but no, your bike's beautiful. Australia is just absolutely beautiful, man. Just to kind of bring us back to something here. Australia, man, we've talked about it ever since we talked. Like I've been tracking. I have a Google flight tracker on for flights to Sydney. When they're at like the lowest, they've been over a certain period of time. And like I've seen them as low as like 800 bucks round trip. And I'm just like, oh.

evan corbett (41:48.311)

What?

Jey (42:08.744)

Ahhhh.

evan corbett (42:10.794)

You should just sit up. Actually, here's a kicker for you, because we did speak about it in the pre-lobby.

In our last conversation we did a lot of comparisons, Aussies vs Yanks Give me your Christmas please What was on your Christmas table?

Jey (42:23.951)

Mm-hmm.

Jey (42:27.676)

So Christmas here, so for me, definitely. So it looks a little bit different this year versus other years previous, because of situation, being engaged, having a new partner, and everything like that. So the kids' mom and I, we split Christmas Eve and Christmas Day. She has them Christmas Eve, I have them Christmas Day. And this year it was way different because there was more people to go and see and spend Christmas with as a whole.

And so let's say last year when I had them for Christmas day, we had, I don't know, we probably had mac and cheese, mashed potatoes, a ham, probably cinnamon rolls, because I make homemade cinnamon rolls, so that's the only way I'll eat them.

evan corbett (43:16.596)

Is this a lunch time thing?

Jey (43:18.984)

It's like an afternoon, evening kind of thing.

evan corbett (43:22.172)

Okay, cool. Yeah.

Jey (43:23.496)

Probably like three, four o'clock is when you're probably going to eat most things. So yeah, that's kind of what it looked like last year. This year it looked like way different because of getting them from their mom. So essentially, fiance and I went and picked them up. We brought them back here. We did all of our Christmas things here, had a light breakfast, nothing crazy, and spent some time here.

And then after that, it was going over to her parents' house to where they had a bunch of gifts and everything for them. So I was then spending time over there. And they're Latino, they're Mexican. And so it was definitely different. I can't even remember what we ate, but I'm pretty sure we just ate like some meat and tortillas and things like that. Nothing crazy. Christmas Eve, we had gone over to some of her families because I didn't have the kids. So we...

Went over to some of her families, had tamales and pasole and just all the good shit. All the good shit. Authentic, delicious, some pollo verde, tamales, so good, so good, so good. And then, Monday, Christmas day, we did that. We were exhausted. So we didn't really make anything big or extravagant this year for Christmas. I think we ended up going to...

carne cerita which is a Mexican like or not Mexican like Latino Hispanic like shop meat market kind of thing. So we went to the carne cerita got a bunch of different meats I think we got like four pounds of meat cooked it up had a big old taco bar because that's what we decided we wanted to be our thing for Christmas Eve was just to do tacos and have a big old taco bar and hang out kind of thing so that's kind of where we landed was just a big old taco bar.

evan corbett (45:00.255)

Okay.

Jey (45:21.368)

and things like that. So it was super, it was super good. It was fun. Little burritos, things like that. It was, it was delicious. So that's kind of what Christmas looks like on this side for us now.

evan corbett (45:29.802)

Yeah, nice. It's, uh, we... Obviously...

Different different areas different temps ours is Because like Christmas is it's always fucking hot so Very limited meat. It's generally like a big seafood, but at least in my household It's a big seafood thing. So essentially, you know We have the house we've got we've got the big house, you know the pool and the rooms and all that shit So we do the entertaining So everybody comes to my house, which means

Jey (45:46.705)

Ellen.

Jey (45:58.44)

Hmm.

Jey (46:02.664)

of it.

evan corbett (46:05.35)

I don't have to drive so I can drink. So, you know, like obviously, you know, the 6am champagne, while Addie's opening up her gifts, me and the missus pop open a bottle. And then we get straight stuck into it. The morning essentially is just trying to keep away from the boss, because if we get in her kitchen, if we get in her way,

Jey (46:08.37)

Oh blessings.

evan corbett (46:33.93)

Adi and I were going to get in trouble. So, one...

Jey (46:36.368)

Yeah, that champagne glass she's drinking on it is gonna be broken by your head.

evan corbett (46:41.95)

Yeah, we definitely punished it She ended up making like I think like 8 or 12 liters of cocktails like in big dispensers we had We had about I think was three or three or six kilos. I think was six kilos a snapper On the Barbie we had three and a half kilos of prawns We had

Jey (46:53.884)

That's cool.

Jey (47:03.016)

Okay.

Jey (47:08.197)

Oof.

evan corbett (47:11.166)

scampy they're like think like yabbies but just bigger or like big prawns with claws like yep we had those

Jey (47:17.352)

Okay, I don't. Yeah, definitely.

evan corbett (47:25.362)

Oh, actually, we did have a piece of meat. We had a Tadukkin. We put a Tadukkin in the oven. Yeah, in the oven. Because my sister doesn't eat seafood. Minimal salads, you know, you don't make friends with salad. Copious amounts of alcohol in the pool. You know, the music going. The Barbies firing is just we try to get cricket.

Jey (47:30.556)

Nice.

Jey (47:40.76)

No, you don't.

evan corbett (47:54.23)

But most Aussies, especially on Boxing Day, always have a game of park cricket going. But by that...

Jey (48:01.828)

Now Boxing Day is the 26th, right?

evan corbett (48:05.738)

Yeah, yeah. So it's a follow-up party, so to speak, because Christmas you try and eat, you start eating anywhere between 11.30 and you finish about 3. And like most people go home around about the 4.35 and you got to squeeze Die Hard in. Die Hard number one, you got to watch Die Hard somewhere during that day.

Jey (48:06.961)

Okay.

Jey (48:28.93)

100%.

evan corbett (48:30.822)

And then Boxing Day is especially you ask any Aussie. The only thing that goes on the TV on Boxing Day is the cricket. Most of it like I don't watch cricket.

Jey (48:39.676)

Now what is Boxing Day? I've heard about it, but what is Boxing Day? Like that when the shops are discounted and you get great deals. Okay.

evan corbett (48:43.683)

Um You know what

Yeah, the big Boxing Day sales. That is one of them. I can't actually tell you, unless I Google it, exactly what Boxing Day is. But for me, the thing that I equate with Boxing Day is obviously the big sales. All the shops are allowed to open up and they start selling everything off cheap that they brought in just for Christmas. But it's cricket. It's...

Jey (49:00.088)

Nah, it's fine. We'll leave that to the listeners.

Jey (49:09.32)

Okay.

evan corbett (49:17.366)

Back to essentially Christmas Day again, no presents, copious amounts of food, drinking and the cricket on the TV screaming for the Aussies. It's basically just a second Christmas Day without presents.

And then the 27th is cleaning up. Getting rid of all the wrapping paper, all the empty beer cans, all doing all like all the dishes and the hoses and cleaning it, cleaning up the pool area. It's just. Yeah. It's just next level. But we've always had seafood. There's always seafood on the table. Well, yeah, yeah. And again, the beer, I don't have to drive.

Jey (49:40.444)

hahahaha

Jey (49:57.404)

That's the perks of being the host.

Jey (50:03.148)

Ha ha.

evan corbett (50:04.414)

my sister, poor chick, she was at our house until about 4.30 and then had to drive about two hours to go see her in-laws.

Jey (50:16.378)

Mmm. Gross.

evan corbett (50:18.134)

So, yeah, that for me, I just, no.

Jey (50:20.432)

My laws are only about 10 minutes away, so it's very convenient.

evan corbett (50:26.443)

Oh yeah, you're lucky. We are lucky if it wasn't.

subconsciously maybe we bought this house because of the entertainment factor. Really we bought a Ferrari but my sister's house is too small. She could not fit you know like the 12-15 people that always turn up on Christmas Day. You know so we're very lucky that we've got the house for it. And so yeah I don't have to drive so I can drink.

Jey (50:38.15)

Mm-hmm.

Jey (50:43.333)

Yeah.

Jey (51:02.376)

for sure. All right, let's get this wrapped up here. We'll have to schedule a part three, probably for 2025. We'll leave that on the calendar. Just bookmark it for 2025. Well, at this rate, 2022, 14 months. So yeah, we're probably looking in 2025. So probably spring 2025 we're looking at maybe.

evan corbett (51:14.072)

Hahaha

evan corbett (51:23.347)

Yeah, it's crazy isn't it?

Jey (51:32.668)

So Bookmark, it will be approaching probably 200 by then, which is just phenomenal to think about just how far we've come and how much further we have to go.

evan corbett (51:41.202)

It's that it is amazing I'm actually I'm really interested in one of your up-and-coming podcast when you have the doctor on And I would not be the only dad who listens to you with a Special child so having a doctor on your show is just amazing and thank you for arranging

Jey (51:51.489)

Yes.

Jey (52:04.772)

Yeah, so his name is Dr. Anthony Harrell. Super cool dude. We've just been exchanging messages and whatnot, but I just I really just liked how the approach he takes in his work with where he's more focused on the prevention very kind of like a ways to well approach. I don't know if you ever heard of ways to well bring them bring them Bruce. I think it's his name.

Just more of these guys that are out there that are really trying to break the commonalities and his focus is working with dads. I could have, you know, there's so many coaches, there's so many life-fit coaches, lifestyle coaches, fitness coaches and whatnot out there. I've talked to so many of them. They're all phenomenal dudes. I've talked to so many just different people since we last spoke. There's been so many.

And it's just so cool just to get to know just different walks of life, different dads, different experience and whatnot. It's probably the coolest part. Um, which I love, I love that part of the podcast and being able to get to know people and relate and share stories. And the best part of it is when it hits the one person that it has to hit. Um, we've had recent interactions to where our podcast hit one guy and it

it was exactly what he needed, the conversation. He said it felt like he was just sitting in the car with us, chatting, conversating. He was part of the conversation. That just meant so much that it helped him get through that time. And that's why we do it. We don't do it for sponsorships or for money or for the ad money or the revenue or anything. We never will. Cause that's not what's important. It's about sharing the stories, giving these different men and women a platform to share their platform, share their stories and to give themselves like...

you know, the opportunity to talk about, you know, Sturge Weber and hopefully bring just enough awareness to maybe it catches with the right person eventually and things like that, so.

evan corbett (54:06.242)

Well that's it there, you actually hit the nail on the head right? Because if you can reach that one person who really needs to hear something and it lets them know that, hey mate, fuck, you're not alone. You know, there are other people out there doing it, doing it similar, just reach out.

Jey (54:20.213)

Mm-hmm. Or maybe it.

Jey (54:27.066)

Exactly, just reach out, you know, and hit our email.

evan corbett (54:27.074)

Like if there are any other fathers out there If there are any other fathers out there who are listening to you that has a child with search webber or questions or just want to shoot the shit Hit me up You know, speak to Jay, get my details I'm more than happy to have a FaceTime beard with you

Jey (54:42.362)

Thank you.

Jey (54:45.88)

Exactly, and that's exactly what we want. You know, that's exactly why we do this show, is to make those connections, to make you not feel so alone. Because who knows, there probably is another dad out there that's like, damn it, my kid has George Weber, I don't know what to do, they're so far behind, I don't, there's no hope, it's hopeless, I can't do it kind of thing, and maybe they just need to talk to you, or vice versa. Maybe you have the blueprint that they need to start.

to look, to feel hope or whatnot. And it's all about giving, instilling that hope into each other. That's what we can do in this community and with this platform and just as men, as fathers, as brothers, as part of the fatherhood brotherhood, you know, to share that hope, to instill it in one another, to share those tips, tricks and strategies. And this worked for me. Have you tried this? No, I haven't. I'm gonna try it. Shit, that worked. That was amazing. What next? What else do you got?

to share those stories and experiences because that's what fatherhood is about. That's what being a man is about. That's what being in this sphere is about. Being a dad is about. It's not about you. It's about everyone else around you because you're always helping your kid. You're helping your partner. You can help yourself by helping someone else. It's a huge model of what we do and why we do it. So

evan corbett (55:55.35)

If.

evan corbett (56:09.11)

Yeah, no, absolutely mate.

Jey (56:11.748)

But let's end here. So last time you were on, we didn't have this as part of the show. It's the YDP-3. So if you've listened, which I know you have, you better have over the last year or so. The YDP-3 is three questions that we've been asking guests for quite some time now just to end our show and to get the best squeeze out the last of the nuggets from the Nugget Bag. So the first question here, the YDP-3 is, where are you rooted?

Like where do your roots run, your core values, core memories, what's important to you, like where are those roots?

evan corbett (56:49.186)

Jesus Christ, I thought you were just gonna ask me what color paint I like My my core values Wow Honestly, it's just I Just want to wake up every day and just try and help someone I want to make sure That it's easy to be a good bloke than this be an asshole I want to make sure that I've always got a roof over my daughter's head I want to make sure that I'm somehow making this place

Jey (56:54.556)

Nope.

evan corbett (57:18.774)

this world a better place for her. You know, it's not, I don't really have a corset. Like, you know, I could say, oh, family, this, that, but if I can just make someone smile, if I can secure the future for my daughter, I'll be fucking stoked. You know, I walk, I walk up when I walk the dogs, I say, good day, good morning. Happy new year to everybody. I walk past some acknowledged some smile. Well, guess what? That person wasn't smiling 30 seconds prior to me walking past.

Jey (57:48.433)

Mm-hmm.

evan corbett (57:48.918)

But they smiled then and they probably smiled for five seconds as we passed as I walked off. So that just made someone smile. How fucking awesome is that? You know, so.

Jey (57:57.768)

That's the best. It's seriously the best. Like I, I love that. I did that at work. Like when it was our first day back after the new year, I was like, oh, I haven't seen you since last year. You know, the, the time was classic. It was my favorite cause it legit, it made everyone smile. It made them roll their eyes, made them laugh. Like made being back at work after the new years and with the new year's hangover a little bit, a little bit more bearable.

evan corbett (58:02.91)

Yeah, I just

evan corbett (58:21.558)

Yeah.

evan corbett (58:25.066)

For me it's just the little things. I just do little things that matter. And for someone, that's a fucking big thing. And so, yeah, for me I just wanna... Just wanna help.

Jey (58:32.72)

So long.

Jey (58:37.684)

Alright, next question here. What grounds you? What brings you back when you're all stressy and depressy and anxious or upset, frustrated, whatever? What grounds you? What snaps you right back into reality?

evan corbett (58:57.602)

Probably the darkest day was we spent a week in the ICU with Daddy a couple of years ago where she was having a cluster of seizures and I had to video her and so I've got all these videos and photos on my phone.

And so when I'm having a really fucked up day, like stress work, whatever, I'll go back through my photos and I'll start there. I started that really shitty day. And when she woke up out of the coma, she, the first thing she wanted, um, was a spoonful of chocolate mousse, but she gave me a thumbs up. Like she was, so she was paralyzed on her

Jey (59:43.036)

Hehehe

evan corbett (59:48.778)

right side of a body, but she gave me a thumbs up with the left.

which says, dad, I've got this. And now if she can do that, if she can go through all that bullshit, just give me a thumbs up and a smile, then this shit thing, whatever's caused my day to be bad, it's not that bad, is it? So I just start from there and then I scroll through and I look at pictures. I look at videos of her having fun. I look at...

I've even got a photo of my missus, my pissed off, giving me an eyebrow lift, which I think is cute. I look at that. So, it's my girls. My girls bring me down. Like, bring me back down to earth when I'm having a bad day. They bring everything full circle, you know. It's definitely my girls. Oh, and my dog. Can't forget my dog.

Jey (01:00:24.74)

Hmm

Jey (01:00:39.996)

I love that. I love that. Last one. I love that. Alright, your last one here. Sorry, the cough is not part of the question. Let's say I come to you, you don't know me. I'm just some random yank, some random bloke. I just come up to you, I'm like, look man, I don't know who you are. I don't know what you're about. But I see that you're happy.

evan corbett (01:00:40.846)

I just played with him, so yeah, family.

Jey (01:01:08.356)

I see that you're having a good time with your kid. I'm not. Shit sucks right now. This is probably the lowest I've ever been. You get to tell me one piece of advice that's gonna encompass helping me come out of this dark, down, depressed place I'm at. What are you gonna start with and what's your two minute thing that you get to tell me?

evan corbett (01:01:32.786)

Straight off the bat we go straight to the pub. You can't have a deep and meaningful without having a cold beer. Because that's when the truth really comes out. Straight to the pub. And I'm going to say mate, don't sweat the small stuff. You know, you're having a bad day, your kid pissed on the floor. So what? I bet they had fun doing it. What, it took you 30 seconds to clean up? You know, don't sweat the small stuff. Cling on to the big things. The things that...

matter. Is your kid healthy? Is your kid happy when you're around? Really cling on to those. Lock that shit down and just take it day by day. Your kid tipped their food onto the floor. Your kid had food. There are fucking kids out there that don't have food. So just clean it up. Find out what's wrong because there's going to be something deeper going on.

Adi, Adi can't fully verbalize her emotions. So we need to work that out. You can't just snap at her. She's trying to tell you, she's trying to tell me what's wrong. So I have to try and listen. So don't sweat that little shit, you know, dig deeper and cling onto the good things that really matter.

Jey (01:02:54.052)

I love that. I think that's so important.

evan corbett (01:02:54.662)

That's pretty much it and then it would be your shout. I'd be sending you to the bar to get the next round

Jey (01:03:03.709)

No, I think that's so important. I have this conversation all the time with people, with parents, with caregivers. Okay, so what? You have a mess. What's that mess mean? Let's put it in perspective. Yes, you have a big ass pile of laundry, but let's put that in perspective. Let's put all these different things into perspective on what they truly mean and what they stem from. So what? You have toys all over the place. What's that mean?

So what they pissed on the floor, yeah, they probably had fun doing it. You know, and I think just keeping that so perspective is so crucial, but, um, Evan, what, where, if the people are curious about Sturge Weber, what resources or things do you have that they could, that you like to shout out, that you support, that you're familiar with, um, that you know, that it's like a trusted, reliable resource for them to go and get some more information, educate themselves and learn a little bit more.

evan corbett (01:03:33.419)

Yeah, fuckin'

evan corbett (01:04:00.674)

So everything comes out of the states. There is the Sturge-Weber Foundation, the Vascular Malformation Foundation, predominantly run by, I think her name is Dr. Roselle. She's fucking amazing. There's a lot of it on Facebook, thankfully, because Facebook is the source of most information these days. But definitely the Sturge-Weber and Vascular Malformation.

malformation clinic and foundations that is where you get majority of the information when you google Sturge-Weber syndrome and you go into the images it's so fucking confronting because Dr. Google will always give you worse scenario but if you google Sturge-Weber foundation or vascular malformation foundation that's where you get your real information now it won't tell you that there are three different like Dr. Google won't tell you that there are three different types

Jey (01:04:46.032)

gives you the worst.

evan corbett (01:04:59.542)

You know, one that's, two that are visual, one that's very impactful and one you, it's nothing. You know, you don't, it's not, it's not even a visual. You, they don't have the port wine stain, but Dr. Google doesn't tell you that, but the Sturgeon Wobba Foundation will.

Jey (01:05:16.02)

Yep, and just for visual people, this is what Google pulls up if you're looking at us on YouTube or anything when you type in Sturge-Weber Syndrome. Like you're saying, 100%. It pulls up the worst of it. All these just...it honestly looks horrific and scary and very easy to misunderstand. However, you type in... You said the Sturge... The Sturge...

GERGE Weber Foundation right there Look at that, that's not scary That's not intimidating

evan corbett (01:05:49.358)

There she is.

evan corbett (01:05:57.719)

I actually have that ribbon tattoo on my forearm.

Jey (01:06:00.792)

You do, yeah, I think I've seen that. But you're right here at Sterge Weber Foundation. So, sterge-weber.org, so if you're looking at it here, but that's not scary. That's not scary.

evan corbett (01:06:02.417)

Yeah

evan corbett (01:06:11.679)

Some kids, like I said, it's all different. Some kids are perfectly able and functioning.

Jey (01:06:17.)

Mm-hmm.

Jey (01:06:20.88)

Yeah. So that's not scary. Like it's not scary. Like go to the right resources, use the right things and educate yourself. Cause this is something that's really worth educating yourself about learning more, exploring and just being able to recognize it. So instead of you seeing a little girl at the grocery store that has port wine or is affected by Sturge Webber and saying that she looks like a little monster with her face paint. You could actually be sensitive. You could.

evan corbett (01:06:30.423)

Yeah.

Jey (01:06:50.14)

ask and engage in that conversation. Because if I'm just a normal person at the grocery store and I come up to you and I'm like, oh, your little girl's face paint makes her look like a little monster, so cute. Versus, hey, does she have port wine or possibly even Sturge Weber? Man, that's really tough, but you guys look like you're doing great. Awesome, man, keep pushing. That's gonna come off a lot more different. That's the difference, you know?

evan corbett (01:07:15.714)

Well that's it Sturge.

evan corbett (01:07:20.342)

Yeah, well, Sturge Weber isn't contagious, but awareness is.

Jey (01:07:23.876)

Mm-hmm hundred percent So and that's what we're here to bring your awareness, but Evan, you know, thank you so much for having just an amazing part, too I'll make sure I post I'll make sure I post some information to Sturge Webbers some resources And then if you guys ever want to talk to Evan guys want to learn more about it firsthand perspective Hit me up. I'll give you his details his contact so that you can get in contact with him

But Evan, again, thanks man. I appreciate your time. I appreciate you being here. And I appreciate your openness and willingness to spread that awareness, because it is contagious.

evan corbett (01:08:02.538)

No, no, definitely thank you for having me and I'll close it out with Pineapple does belong on pizza.

Jey (01:08:08.828)

I'm editing that out, maybe.

Until next time everybody, you guys have a great week. We'll see you next week.

evan corbett (01:08:14.881)

Thanks for watching

evan corbett (01:08:19.054)

Cheers.


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