CyberMonday, December 1, 2025. Week 49.
Go buy The Monster Inside My Brother by Nicole Ciccone illustrated by Lena Bardy.
Bookshop: https://bookshop.org/p/books/the-monster-inside-my-brother-nicole-ciccone/8986b9c64d1ebe5d?ean=9798999980700&next=t&
Barnes and Noble: https://www.barnesandnoble.com/w/the-monster-inside-my-brother-nicole-m-ciccone/1148368158
Amazon: https://a.co/d/imfxmwG
See you Thursday at the CURE SYNGAP1 Conference 2025 Atlanta: https://curesyngap1.org/calendar/cure-syngap1-conference-2025-hosted-by-srf/
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Episode 191 of #Syngap10 #CureSYNGAP1
Below is a transcript from the video:
Mike Graglia
[00:00:00] Hello, Syngap Land. My name is Michael Graglia, and this is episode 191 of the Cure Syngap1 podcast. Today is a special episode because I’m just going to talk about one thing. I’m going to talk about this amazing book that has recently come out. Yep, this one. And I have a special guest with me. Who are you?
John Graglia
[00:00:18] My name is John. And this is my dad with the funny ears.
Mike Graglia
[00:00:24] Yeah, with the funny ears. And you are a brother. You’re Tony’s brother, right? So you’re a Syngap sibling. You’re a kid with a Syngap brother. And this book is called…
John Graglia
[00:00:34] And this book is about… Uh…
Mike Graglia
00:00:37] What’s it about?
John Graglia
[00:00:39] A Syngap kid.
Mike Graglia
[00:00:42] A Syngap kid. And so this book is called The Monster Inside My Brother. The author is Nicole M. Ciccione, who is one of our Syngap1 moms. And it is illustrated by Lena Barty. I have no idea who Lena Bardy is, but she can definitely draw. Instead of just telling you this book’s amazing and telling you to buy it, I just thought I’d read it to you. I just thought I’d read it to you. Once I record this episode, I’m going to send it to Nicole and make sure. She doesn’t mind me reading it to you. And if she doesn’t, I’m going to release this episode. So I’m going to say this episode is shared with Nicole’s permission. Because if she doesn’t give me permission, I’m not going to read it. So as you can see here, the illustrations are absolutely beautiful. And then she dedicates it to her sons, Jackson and Julius. Um, beautiful dedication here. Dedicated to my sons, Jackson and Julius. May you always find light in life’s challenges and know that love makes every story worth telling. Okay. First thing you see here is just beautiful illustrations. I’m going to read it. John’s going to explain it. Everybody thinks monsters live under beds in dark closets or inside haunted houses, but I know better. Because the scariest monster I’ve ever met lives inside my big brother, JJ. His name is Sin Snap. See what she did there? That’s Sin Snap. And he follows JJ everywhere. What do you think, John? Do you agree?
John Graglia
[00:02:01] There’s not actually a monster. Okay. The monster is Syngap. And they’re using ‘sin snap’ to turn ‘Syngap’ into a name.
Mike Graglia
[00:02:13] I see.
Mike Graglia
00:02:15] Okay, can I turn the page?
John Graglia
[00:02:17] But there’s not actually a monster.
Mike Graglia
[00:02:18] There’s not actually a monster. Well, for the purposes of this story, because this is a way to explain kind of what this disease is like. You don’t think so?
John Graglia
[00:02:27] Okay.
Mike Graglia
[00:02:27] Okay, okay let’s just roll with it. Let’s see what let’s see what happens. So next page. Again, beautiful illustrations. I first see Sin Snap when I am small. A flicker, a whisper. Is he there at all? But then I watch his dark shape grow, wrapping around JJ like a shadow. You see the monster is grabbing JJ. So basically, what they’re saying here, well, what do you think of that? Do you see Sin Snap growing over time?
John Graglia
[00:02:57] Well… Uh. I know. Understand that as much as the previous page.
Mike Graglia
[00:03:10] Yeah. Okay. Should I just keep going? I’m going to read the next page, John. You don’t have to talk about everything. Sin snap that makes JJ’s muscles weak. He can’t run, jump, or climb like me. JJ works hard to keep things still, but Sin Snap has his own wild will. So he’s basically saying that, because of Syngap, Tony’s not as physically capable as you. But. I’m sorry, that’s a mysterious voice off camera. What do you think? What do you think, John? Right, that’s because of Syngap or Sin snap then.
John Graglia
[00:03:56] Syngap.
Mike Graglia
[00:03:56] Well, you know it’s Syngap, because you’re a Syngap brother. But in this story, we’re calling Syngap, Synsnap.
John Graglia
[00:04:02] Because we’re pretending Syngap is a monster.
Mike Graglia
[00:04:05] But Syngap is kind of a monster. I like this. It kind of takes over the person. Like there’s Tony and there’s the disease. And we know Tony’s great. But the disease isn’t, right?
John Graglia
[00:04:15] Okay, right.
Mike Graglia
[00:04:16] It’s easier to think of it as a different okay. Let’s keep going. Oh boy, look at this picture. Okay, so over here we have Sin Snap’s favorite game? Zoom Crash Race. When mom tries to shop, JJ takes off, bumping into shelves and leaving a trail of cans and crackers all over the place. I try to be mom’s helper. I grab her hand tight and run as fast as my feet can go. My heart pounds when JJ runs away. And I think mom’s heart does too. When JJ is safe, the butterflies in my belly finally rest. What do you think of this one, John?
John Graglia
00:04:54] Mmm. Again, the same. Sin Snap is Syngap.
Mike Graglia
[00:05:00] Right.
John Graglia
[00:05:01] And… They. It’s basically saying that. They’re scared when their, their big brother is running around and…
Mike Graglia
[00:05:19] Breaking everything.
John Graglia
[00:05:20] Breaking everything in public.
Mike Graglia
[00:05:22] Does your brother do that?
John Graglia
[00:05:24] Hmm-mmm. When… He’s a… Oh, does he?
Mike Graglia
[00:05:31] He goes a little crazy sometimes.
John Graglia
[00:05:32] But, like, how often?
Mike Graglia
[00:05:35] Well, it depends on… Has he ever done this?
John Graglia
[00:05:36]Well… He does it every time he’s in the store, but I’m not thinking he does it a lot because he’s not in the store a lot.
Mike Graglia
[00:05:45] Right, we don’t take him to the store because when we do take him to the store, this is what happens, right? Let’s turn the page. It’s a pretty great book. JJ talks in a language all his own. He flaps, hums, and squeals when he is happy. He tells me stories without any words in the sweetest voice you’ve never heard. Sometimes people stop and stare just to see what Sin Snap will dare. What do you think of that one? Huh? What do you think? Does that make sense to you? Okay, let’s not explain this one. We’re going to keep going. In fact, how about I just keep reading and if you want to say something, you can interrupt me.
John Graglia
[00:06:30] I’ll tap your back.
Mike Graglia
[00:06:30] You’ll tap my back. That’s a great idea.
Mike Graglia
[00:06:35] Oh, look, it’s Syngap. Hi, Tony.
Tony Graglia
[00:06:37] Are you guys going to the movie? Yeah, we’re going to the movie.
Mike Graglia
[00:06:40] What movie are we going to, Tony?
Tony Graglia
[00:06:43] SpongeBob movie.
Mike Graglia
[00:06:45] You want us to come and watch SpongeBob with you?
John Graglia
[00:06:47] We’ll join when we’re done with this little thing.
Mike Graglia
[00:06:55] Okay, I’m working here. I’ll be right out with John. Mom, can you close the door please? Okay, Sin Snap thinks he’s the boss, but he forgot one thing. JJ is not alone. He has me. And together we are strong— even with Sin Snap around, we go on big adventures. We read books, sometimes I read to him, and sometimes he just loves flipping through pages. Right, like in the Dogman Bush. Right. We take off like rockets on wheels. JJ laughs the loudest and never watches where he’s going. The water helps JJ’s body relax, his muscles loosen, and his mind feels calm. Like the ripples in the waves whisper quiet secrets. Okay, I’m sorry, would you like to say something?
John Graglia
[00:07:37] So…
Mike Graglia
[00:07:38 ] Yeah.
John Graglia
[00:07:41] That happened. Well… That happened with Tony, like when… He has. He used to have. Captain Underpants. And what else?
Mike Graglia
[00:07:54] Yeah. Dog Man. There was that other one. But really, Captain Underpants and Dog Man. And then Bad Guys. Bad Guys.
John Graglia
[00:08:05] Oh, yeah.
Mike Graglia
[00:08:05] And the Cat Club.
John Graglia
[00:08:08] I thought it was Cat Club.
Mike Graglia
[00:08:09] Cat Kid Club and Bone.
John Graglia
[00:08:10] Cat Kid Club and Bone. Uh, my dad thinks bones. Yeah, so. He would like.
Mike Graglia
[00:08:17] Just flipping the pages and not really reading.
John Graglia
[00:08:20] That’s so cool.
Mike Graglia
[00:08:21] And what, so yeah, so you’re saying this resonates. And then what about this thing about water? Do you think, is that true of Tony too? Does water help?
John Graglia
[00:08:28] He kind of just swims around.
Mike Graglia
[00:08:30] But does it help him calm down?
John Graglia
[00:08:33] He doesn’t. He’s never crazy in water. Yeah. He likes swimming, but he’s not good at it.
Mike Graglia
[00:08:40] Not like you. He’s not on swim teams.
John Graglia
[00:08:43] But he’s kind of like…
Mike Graglia
[00:08:44] Right, right.
John Graglia
[00:08:45] He’s not really good at it. He kind of doggy paddles and drags his legs.
Mike Graglia
[00:08:50] But he doesn’t drown, which is good, because some kids, when they get in water, they drown. At least he’s going to survive.
John Graglia
[00:08:56] Yeah, at least you can swim.
Mike Graglia
[00:08:58] Can I keep reading? But thanks for your insights. That’s exactly right. If you want to say something, just tap me on the back. We’ll keep going. JJ gets extra excited at the airport. Uh-oh. He rides the escalators up and down, opens every door, and presses every button in sight. He’s a button expert.
John Graglia
[00:09:15] What?
Mike Graglia
[00:09:16] Sin snap can’t stop us, we always find a way to have fun. Yeah, you want to say something?
John Graglia
[00:09:25] I never go to the airport with brother. Well, except we did it one time.
Mike Graglia
[00:09:31] And how did that go?
John Graglia
[00:09:34] I don’t remember exactly what.
Mike Graglia
[00:09:37] It was a little hectic. It was a little hectic. Let’s keep going. Sin, oh, look at this page. Sin snap never takes a break. Someday sin snap feels extra strong. JJ cries a lot and I don’t know why. Our days don’t always go as planned. One minute JJ is laughing, the next he is sad. It’s hard for me too. But I know JJ isn’t trying to be difficult. It’s just Sin Snap making everything harder. Hmm. I figure out ways to help my brother fight back. I wait patiently when JJ needs extra time. I help mom change his clothes when JJ squirms and shouts. I share my toys even when he throws them. I refilled, see, today. He broke your Lego and I had to fix it. I share my toys even when he throws them. I refill JJ’s water bottle when he’s thirsty. I bring him his favorite blanket when he’s sad. I hold his hand when he feels scared. And I always share my snacks because JJ always wants a bite. I might be younger, but I can still be JJ’s helper. What do you think of these pages?
John Graglia
[00:10:44] I didn’t ask.
Mike Graglia
[00:10:45] Okay, I’ll keep going. Maybe you see someone just like JJ in the lunchroom, the hallway, out at recess one day. They might move differently or not say a word, but their laughter is something that can still be heard. Maybe you notice a struggle or two, a monster behind them. Just out of view. See, and there’s this picture where there’s these kids who are a little bit different and they all have a little monster behind them. And that monster is just like a way to think about their disease, right? Different isn’t scary. Different is just different. Don’t stare. Be kind. A wave or smile is always fine. Even if no words come through, just give a little time or two. There’s so much you can learn and do when you’re brave enough to try something new. Something wonderful might find you— new friends, new games, a brand new view, so open your heart. It’s not the end. Be kind. Be curious, and be a friend. Want to know the best thing about my brother JJ? He loves big. His smile is brighter than the whole room of lights. His hugs squeeze all the sadness away. He laughs at the silliest things. Since that might make life tough, but JJ will always be my big brother. And I’ll always be his best friend because love is stronger than any monster. I wish everyone could see JJ the way I do. He’s kind, he’s funny, he’s so much more than his monster. He’s my big brother and I love him just the way he is. The end.
John Graglia
[00:12:39] What’s that?
Mike Graglia
[00:12:40] This is just saying there’s going to be more stories. And then there’s this beautiful thing at the back where she talks about Syngap. She says, ‘Help us cure SYNGAP1.’ And she… has this nice poem saying to the brave glass children who carry more than the world will ever see and grow up in the shadows of rare disease always watching always giving you are not invisible. You are not forgotten.’ You are the quiet courage, the hidden strength, and the heartbeat that keeps your family moving forward. You are cherished. You are powerful. You are extraordinary. And then, this may be one of my favorite parts of the book: Learn more at syngapresearchfund.org. And what is syngapresearchfund.org?
John Graglia
[00:13:23] It’s… It’s in the wrong name, Cure Syngap1. The name was…
Mike Graglia
[00:13:28] Well, this website will still work. So they can type in syngapresearchfund.org and that will take them to curesyngap1.org. But this is the organization that fights for kids like JJ and Tony, right? So on the more beautiful illustrations, the end. John, what do you think of this book? Thumbs up, thumbs down. What do we think? Thumbs up. Go buy the book, guys. Give it to people. Help them understand. Thanks, Nicole.
John Graglia
[00:13:58] And you can make a video like this.
Mike Graglia
[00:14:01] And you can make a video like this. And if you need any tips, call John. He’d love to help. Yeah.