The Boy Who Must Wear a Helmet to Survive (Sinus Pericranii)

Added: 2026-05-29

[00:00:00]- [Chris] Milo, what do you want the world to know about you?

[00:00:03]- I'd like to know that I'm a very special kid and I have this disease called size Sinus Pericranii.

[00:00:10]It's where your head has like a lot of veins and you have to wear this type of helmet that can come in many different sizes and shapes and colors and there's only about 21 people in the world that have them.

[00:00:25]- [Chris] What is it like to most of the time wear a helmet?

[00:00:29]- It's fine, just sometimes I feel like I might get bullied.

[00:00:33]- Does that happen sometimes? - Yeah.

[00:00:36]- [Chris] In what ways are you bullied?

[00:00:38]- Some people like taunt me about my helmet.

[00:00:41]- [Chris] How do you feel when people taunt you about it?

[00:00:44]- I feel upset. - Your brother said that sometimes he experiences bullying.

[00:00:49]Does he ever talk to you about that?

[00:00:51]- Yeah, and I'll be like, what do you want me to do, Milo?

[00:00:54]And he was like, just talk to them about it and then I'll talk to 'em, and they'll be like, I was just wondering.

[00:01:00]And I'll say, well, you don't have to make fun of him because if you had that condition, he wouldn't make fun of you.

[00:01:06]- [Chris] How do you feel when your sister stands up for you?

[00:01:09]- I feel like a superhero, I feel like Spider-Man.

[00:01:14](calm music) - [Chris] Welcome to SBSK.

[00:01:19]We believe that everybody has a story that's worthy of being heard.

[00:01:23]When we listen to one another, the world becomes a closer place and we all benefit together.

[00:01:31]So without hesitation, let's meet today's friend.

[00:01:38]When you meet somebody for the first time, what do you hope they say to you?

[00:01:43]- I hope they say kind words to me and be nice when they ask me about my helmet.

[00:01:48]- [Chris] What is a nice way to ask about your helmet?

[00:01:50]- You could just say hello, who are you?

[00:01:52]And I would say my name, Milo.

[00:01:54]And if they say, why do you wear a helmet?

[00:01:58]I would tell them why.

[00:01:59]- Milo is an extremely special kid.

[00:02:02]He's really bright, super smart.

[00:02:05]He out fishes me all the time, he's very active, athletic.

[00:02:09]He's just all around a cool guy.

[00:02:12]- [Chris] What do you think when your mom says that?

[00:02:14]- I feel special and I feel very good.

[00:02:17]- [Chris] What will happen if you don't wear your helmet?

[00:02:20]- If I hit my head with my helmet off, then I could be in the safe.

[00:02:26]But if I hit it over in this area or yeah, just mostly over here or kind of over here or in the middle.

[00:02:33]Then there's like 32% chance of dying.

[00:02:39]- [Chris] When did you first learn that?

[00:02:42]- I learned that because I studied about my disease and I asked my doctor about it.

[00:02:47]- [Chris] What is Milo's diagnosis?

[00:02:50]- It is called Sinus Pericranii, that's his main one.

[00:02:54]And we found out about it when he was pretty little.

[00:02:59]He also has ADHD, but how we found out about his Sinus Pericranii was at his prenatal appointments, everything was normal but when he was born, the doctor pediatrician would check his soft spot at each appointment and it just wasn't closing.

[00:03:17]So she referred us to a specialist who deals with like skull type of things.

[00:03:23]He referred us to another specialist and another specialist and we kind of got bounced around until we met someone at the University of Iowa Hospital, a neurosurgeon.

[00:03:32]And he said without a doubt this is Sinus Pericranii and did MRI, angiogram, all that type of stuff.

[00:03:41]And Milo started wearing his helmet when he was, gosh, probably about 10 months old.

[00:03:48]It was right around the time he started walking.

[00:03:50]- [Chris] If somebody out there is out in public like at a park or at a grocery store and they see somebody wearing a helmet, what should they know?

[00:04:00]- They should know not to judge but to be kind.

[00:04:04]- Well it's basically a venous anomaly.

[00:04:07]So it's like we all have dural sinus veins under our skull and he's got a connection between like extracranial and intracranial veins.

[00:04:19]So that's not normal.

[00:04:21]Usually your veins would be underneath your skull and protected, but his is called dominant Sinus Pericranii.

[00:04:29]There's dominant and then there's accessory.

[00:04:31]Accessory is one that can be corrected with surgery, but dominant means that it kind of, the blood is constantly circulating through and so it is what it is.

[00:04:43]- So these veins over here are like my most important veins and over here are ones that are less important.

[00:04:53]But the ones kind of in the middle of my head aren't that important.

[00:04:59]Like if I hit it, it could be bad but usually not bad.

[00:05:04]- He's hit his head before, we've had some scary times but 99% of the time he wears his helmet when he is active.

[00:05:11]But if he were to cut the veins in the front then it could potentially be immediately fatal.

[00:05:18]- [Chris] What is it like to always have to protect your head?

[00:05:22]- Not bad because I have a helmet and don't have to worry about hurting my head if I have my helmet on.

[00:05:29]But I feel fine 'cause I'm getting to the age where I'm getting older and older and I feel like I'm more responsible with it off.

[00:05:37]- He can't play football or any serious contact sports because his veins that are exposed on his forehead can't be lacerated or ruptured or anything because that could be fatal, unfortunately.

[00:05:52]So it's just important for him to wear it for protection purposes.

[00:05:55]But otherwise Milo, excluding his ADHD, he's cognitively normal and yeah, I think his condition causes him headaches sometimes, but it's mostly just wear the helmet to be safe and he's good to go.

[00:06:10]- [Chris] Do you sometimes feel like you have to be cautious around your brother because of his condition?

[00:06:15]- No, I mean sometimes like I don't wanna play too rough with him 'cause he's younger than me and because of Sinus Pericranii.

[00:06:26]- [Chris] Do you want your sister to be cautious around you?

[00:06:28]- No, I think I'm tough enough for her.

[00:06:32]- We have the camera right there and we can see ourselves.

[00:06:35]What do you think when you see yourself?

[00:06:37]- I think it's cool because I feel like it's fun to be on YouTube for the first time.

[00:06:42]- And I gotta say we just met and I can already tell you're an amazing kid and one of the things I really appreciate you is how much you accept yourself and you embrace yourself, I think that's great.

[00:06:54]- Yes.

[00:06:56]- And I think you should keep on doing that throughout your life.

[00:06:58]- Yes, I will.

[00:06:59]- That is one of the best characteristics a person can have.

[00:07:03]What did you think when you first learned that you have Sinus Pericranii?

[00:07:08]- I felt cool because I had never heard that word in my life, so then I asked my doctor about it and he said that there's like 21 people that have it and that makes me feel special.

[00:07:22]- [Chris] Tell me all about your sister.

[00:07:24]- That she, my sister, she is 11 years old and one of her favorite things to do is hang out with her friends.

[00:07:33]- Tell me about your brother.

[00:07:36]- Well I do like his helmet sometimes in the morning like I'll be like, Milo, where's your helmet?

[00:07:42]But I know for like other kids they don't have to be like, where's your helmet?

[00:07:45]Because like they don't have a helmet.

[00:07:47]- [Chris] What do you know about your brother's condition?

[00:07:50]- I know that he has to be like careful sometimes like as he was saying, he can't do football and like we'll play catch just with like a basketball or just a fun ball.

[00:08:03]We'll just play catch outside and he doesn't get hurt.

[00:08:07]- [Chris] What is the best thing about having a sister?

[00:08:10]- The best thing about having a sister is that I have someone to play with.

[00:08:14]- [Chris] What's the best thing about having a brother?

[00:08:19]- I can hang out with him when like I don't need a friend to come over every day 'cause I have him.

[00:08:24]- [Chris] If somebody comes up to you that you don't know and they want to be your friend, do you want them to ask you about your helmet or do you want them just to ask you about the things you like?

[00:08:33]- Ask me about my helmet.

[00:08:35]- [Chris] Why do you like when people ask you about your helmet?

[00:08:38]- So that people understand me in a unique way.

[00:08:43]- [Chris] Do you have different helmets?

[00:08:45]- Yeah, I have four.

[00:08:47]Just I use this one because it's new but the rest of my ones are old and just special to have 'cause they're from a long time ago.

[00:08:57]- [Chris] What was it like for you when you learned that he had this condition?

[00:09:00]- Oh gosh, I'm not gonna cry.

[00:09:03]It was, I had a lot of nights where I cried myself to sleep honestly because as a mother, he's my second child so I was a little bit seasoned but I didn't know anything about, you know, how do you protect a little boy who's learning how to walk and the doctor tells you he is gonna be normal, live a normal life, try not to let him hit his head.

[00:09:28]And I'm like, oh my gosh.

[00:09:29]Babies hit their heads all the time and especially he started wearing his helmet during like the period of learning how to walk.

[00:09:37]And so I knew it was gonna be a challenge and I had a lot of sleepless nights like worrying, googling, all kinds of stuff.

[00:09:45]But as he's gotten older, I've seen that it's really manageable.

[00:09:52]As far as Sinus Pericranii goes, even though he's got kind of a strong case, it really hasn't impacted him as much as I feared it would.

[00:10:03]- [Chris] Do a lot of people ask you about your brother's helmet?

[00:10:05]- Well sometimes I think it's like 40% people ask him and like 60 ask me because I'll ask them like, why didn't you go up and ask him?

[00:10:16]They'll be like, I don't wanna be rude and I don't wanna go in his business.

[00:10:21]And I'll just say, well he won't be like, he won't think you're rude.

[00:10:25]He just doesn't want you to like make fun of him behind his back.

[00:10:29]So I'll tell them and then I'll be like, if you have any more questions you can go ask him.

[00:10:33]- [Chris] How do you feel when people ask your sister about your helmet instead of you?

[00:10:37]- I feel like I feel upset because they might think that like, I'm a monster.

[00:10:44]- [Chris] What can somebody do to make you feel like you're an amazing awesome kid?

[00:10:49]- Start asking me about it so they don't like have to keep asking my sisters so they know like all about it.

[00:10:57]- [Chris] If you had one message for the whole entire world, what would you say?

[00:11:02]- If you ever get bullied you need to stick up for yourself.

[00:11:06]- [Chris] Do you experience bullying often?

[00:11:10]- Sometimes.

[00:11:11]- [Chris] How can your friends and family support you when you do experience bullying?

[00:11:17]- By sitting down on like a bench or just a couch or a sofa and talk about it and we share things and then we pray.

[00:11:31]- [Chris] What would you like the people to know who do bully you?

[00:11:35]- That if you bully, you will get in trouble.

[00:11:43]- [Chris] Well I want to tell you that whenever you're bullied it's nothing you're doing wrong.

[00:11:48]You're amazing, you're awesome.

[00:11:50]And that's a problem with the other people.

[00:11:53]What do you want people to know about your brother's condition?

[00:11:57]- I want 'em to know that they don't need to be afraid to ask 'cause he wants you to talk to him about it.

[00:12:03]He doesn't want you to like go up to his sister and ask her because it's not her.

[00:12:08]It's not about her, it's about him.

[00:12:10]And I just want 'em to know that they should talk to him instead of me because I'll probably give you the same answer.

[00:12:17]- How does it feel today to be sharing your story?

[00:12:20]- It feels good and I feel very excited.

[00:12:24]- Do you want people to know all about you and all about why you wear a helmet?

[00:12:28]- Yeah.

[00:12:29]- Well I'm happy you wear a helmet 'cause you are amazing and I want you to be safe.

[00:12:34]Do you enjoy educating people about your disease?

[00:12:37]- Yeah, it's pretty fun.

[00:12:39]- [Chris] When you are educating people, what are the main things you want them to understand?

[00:12:44]- Understand that like if I hit my head, I won't literally die, but like if I hit my head too hard I will die, but yeah.

[00:12:52]- [Chris] Is that something you think about often or do you just kind of make accommodations and go about life?

[00:12:57]- Just go about life.

[00:12:59]- If a kid sees you out in public, do you want them to come up and say hi?

[00:13:03]- Yeah.

[00:13:04]- What do you hope they talk about?

[00:13:06]- I hope they talk about my helmet so I can share with them what I'm about and I can tell them my favorite hobbies.

[00:13:13]- Tell me some of your favorite things to do.

[00:13:16]- Some of my favorite things to do is I like to go to the park and I like to go down the slide so fast that when I go fast I go and when I reach the end of the side I slow down and then I jump off and it's fun.

[00:13:34]- That sounds fun, so even with your condition, you're still able to do all kinds of fun things like that?

[00:13:39]- Yeah, I just can't play football or can't I kind of, I could be able to play baseball.

[00:13:46]It's just not football.

[00:13:47]- [Chris] What is it like being the only person at your school who wears a helmet?

[00:13:51]- It feels special and unique.

[00:13:54]- [Chris] It is special and unique and I love that you celebrate who you are.

[00:13:59]- I just always try to encourage my kids, both of them, that they are creatures of intelligence and they are good kids and that they're a blessing to our whole family, to the whole world and that nothing else matters more in the world than just loving people for who they are and just being kind.

[00:14:22]- [Chris] Milo, what is the most important thing your mom's ever taught you?

[00:14:27]- To be kind and generous.

[00:14:30]- Are you proud of who you are?

[00:14:32]- Yeah, I'm proud of who I am.

[00:14:33]- What are you most proud of?

[00:14:34]- I'm proud of that I'm wearing my helmet and that it's very special and I feel like I'm very rare.

[00:14:42]I like to be like one of the 21 people.

[00:14:45]- [Chris] When somebody finishes watching this video, what do you want them to remember most from it?

[00:14:51]- That my condition is very special and unique and doesn't need to be judged.

[00:14:58]- [Chris] Thanks for watching SBSK.

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[00:15:07]You can even meet another friend here, see you next time.