Living with Catastrophic Epilepsy (3 Brain Surgeries and 10,000s of Seizures)

At two years old Haley collapsed in her first of what would be tens of thousands of seizures. After trying every medication available with no progress, she had three brain surgeries. Haley still experiences frequent seizures, and dreams of being seizure-free, but she is still determined to make the most of the life she does have.
Haley's Channel: / @haleyosborn8575
SBSK Patreon: / sbsk
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
/ sbsk

[@SpecialBooksbySpecialKids]

KZbin deleted Haley's channel but here is a link to a new one her family created: kzbin.info/door/XBgJDnjnmKKz42TIk9QkRw

[@et2009bc]

Thank you for sharing :)!

[@ChristinaChrisR]

Subscribed, thank you Chris, Haley and mom. I wonder why yt deleted her channel, but well, what they do often don’t have much rhyme or reason anyways. Thanks again ❤️

[@erikak8187]

@Michael Deerborn I was just about to ask the same thing

[@jillfearson2400]

Very rude KZbin algorithm, I love this channel and may others dealing with seizures. I deal with tonic clonic and partial since I was a young kid. Now in my 20s it's so so so nice to get to if not speak then at least hear about their journey. Haley, you seem like such a cool girl!! ❤️

[@Pandidolod]

KZbin is absolutely maddening and unprincipled.

[@bettybooboo22]

I'm a 50 year old woman and I like cartoons too. Don't let anyone tell you what to love. I'll watch cartoons all day. It's my day and I can like what I want to and so can you.

[@bebe7385]

Amen!! I’m 34 and I love mermaids as well!! ❤️ Wishing you love and light

[@NickanM]

Same, 51 years old! 😁👍

[@aaronjames3228]

I read that as 500 year old woman 😂

[@Areyousayingidontknowmyname]

@Alonzo Gonzalez Normal is so last week.

[@Areyousayingidontknowmyname]

People tend to forget that we all started out watching cartoons. I was a avid gamer at 12 and still rock the game machines at 51.

[@pinkpink-kb6dl]

I think she is a great example of how you can't just boil down people to "functioning at the level of an X year old". Her academics are at 8 years, but it's clear she is not 8. Her verbal skills and thought processes are of a much older person than that. Theres a real intangible sense of maturity within her that resembles that of an older teen. It's important to know someone's mental age isn't just reflected in how much math they can do.

[@waldirzimluizmarques6173]

Exactly. I am not a scientist or an expert in neurology, and I don't know how these tests are made, but that makes sense. I think there's a whole bunch of ways to interpret someone's knowledge and cognition, and all ways have to be considered.

[@adrianmalkovich7101]

Yeah, I had the exact same thought. She seems so thoughtful and empathetic, and she clearly gives real consideration to how she responds, much more so than I'd expect from an average teen her age.

[@BillyBob-jg1gq]

Absolutely agree. She seems incredibly mature even with "childlike" interests

[@meepk633]

It's also the result of what people go through. Like, if you meet a child that's been fighting cancer their whole life, they will have more emotional complexity and maturity of ~100% of their peers. That's just by virtue of having to deal with setbacks and pain that kids are normally protected from. While it might be surprising that her emotional and personality development seems higher than her intellectual age, it is also surprising in children of that biological age. That's what's so cool about this channel.

[@overgrownkudzu]

yep, she's clearly more mature than a small child, even if she struggles academically.

[@ThatkidwithCP]

Her voice is like calm water in the sea.

[@tylerjameson6769]

This is really beautiful and I couldn’t have described it better myself!

[@claire-ls7fk]

Same with her eyes. She is very peaceful

[@kiara6237]

That is not actually ''good'' because she probably don't talk that way with intent to but it is because her tongue should be very damaged due the seizire episodes. I know that because I have seizures too.

[@ThatkidwithCP]

@@kiara6237 I wondered about that.

[@analuisa1214]

@@kiara6237 very likely, my mom had undiagnosed epilepsy for 25 years and her memory and planning abilities are really bad rn, hers weren't the traditional seizures so it didn't do as much damage per seizure, but in a long term situation it definitely causes some issues. She was only diagnosed after my brother's diagnosis, even tho her sister had it for 20 year by then, but my mom's seizures weren't that known when she was a teenager

[@jadelynn1703]

I understand why she gave her mom the side eye about the 6-8 year old comment, she is so smart and well spoken about what she wants to talk about

[@JakeKoenig]

I wish he would've edited that part out. The mom wasn't thinking about this video being seen by millions of people and how that comment would embarrass her daughter. There are ways to say Haley on a different learning timetable without phrasing it like that. 😒

[@AcousticJamesSGP]

I mean Chris does directly address the distinction between academic and social/cognitive "functional age" only seconds later ..@@JakeKoenig

[@ElvenSailor_Main]

I'm shocked to find out she's 14! I genuinely thought she was my age, 22. She's very mature and self aware as someone else said, that's really impressive. I know I seemed the same at that age too, trauma can definitely age someone a little fast but it's not a bad thing. It's survival and proof of how strong they are. I hope she's doing well!

[@sweetpea6843]

Did it surprise you when her mother referred to her as a 6-8 year old, (academically)? It shocked me.... I agree with you; she appears poised, and intelligent, not as a kindergartner....

[@genyridonate4418]

Yes me too !!!!!!!!!​@@sweetpea6843

[@wheelie26]

Hayley, I have epilepsy and have to use a wheelchair and I went swimming with dolphins and they all kept swimming around me all the time and the man who was with me told me that it was because they could sense that I was different than the other people and they were protecting me, just like Sophie. I hope you get to swim with them some day, it’s amazing.

[@Jay-cn6ku]

That sounds incredible!!

[@wheelie26]

@@Jay-cn6ku it was, I would love to do it again.

[@joannakk4800]

woow, amazing! :D

[@sugarsore]

Wow that is incredible. I am so envious!

[@jordangrice3565]

I wish to do this once in life. Amazing creatures.

[@tyshastx]

My son had Brain surgery 6 months ago for epilepsy. So far he's seizure free.

[@BADASSMANDO]

Here's to his continued good health

[@mikeypotts4732]

That's awesome! Wishing you guys well!

[@bebe7385]

May your higher power and the universe bless you and your family with all your hearts desires. I wish you and yours optimal health and wealth in all means.

[@ic3901]

Cheers!

[@tyshastx]

Thanks everyone! ❤

[@kait5758]

I lost my best friend to a seizure this last October. She was 23 years old and also suffered 10,000+ seizures. I always wanted to get her on SBSK for an interview but her parents wouldn’t have been comfortable with it. She would have loved this beautiful young lady and this video. I miss you every day Ashely ❤️

[@alisonrussell5728]

Im so sorry 😢

[@fengxiong520]

I'm sorry for your loss

[@MsFearlessEmpire]

Rest in peace to your dear friend

[@jaxxiet5851]

I’m so sorry for your loss.

[@cazz7672]

💔 Sending some love your way. So sorry about your loss 💔💞💐

[@tailbonetailbone9380]

Chris, you are one of my models for empathetic interviewing. When I'm interviewing patients as a medical intern, and in the future as a physician, I hope to remember how you ask questions to your interviewees, and apply that same empathy, understanding and non-judgement. Thanks for being a role model, my man. and Congrets to Haley for doing the interview! She seems absolutely lovely and I admire her strong will.

[@youtubecommentsguy9805]

Sameee

[@slc1161]

And you’ll get much more important information from patients that may save someone’s life. Like when I was trying to connect with a septic patient’s family. Found out she had come back from India about 2 weeks earlier. I happened to know it was malaria season. Patient had malaria. As a doctor, consider volunteering on a medical trip. Asking questions and hands on are your best tools. Better than tests. Being empathetic makes you a better person all around.

[@garrett621]

You will be a rare physician! Best of luck to you.

[@MoaMorgenstern]

She literally looks and sounds like what I imagine mermaids to look and sound like 💖

[@b-six-twelve]

Now that you mention it... I see it

[@1rage17]

Like MELODY!

[@clardergrarder4991]

OMG thats absolutely true!

[@DeMonotheist]

Exaggerating..

[@d.olluwu]

@@DeMonotheist no, they’re not exaggerating at all :)

[@WheelzGaming88]

You have a whole community proud of you now!

[@Erinj215]

Amen!! ❤️❤️❤️

[@WheelzGaming88]

He absolutely got reported here

[@jeremeysmelltoast7829]

@@jannananaa I just looked at his channel w 20 subs hes a hateful little man w a small brain . And weak character in his soul .

[@mvannorden02]

Yes!! Absolutely right. You've got a fan here in Texas rooting for you every day! ❤️ Big hugs and lots love!

[@kashsattar5437]

AMEN!!!

[@kindpunk420]

I just wanna say that liking cartoons that are for a "younger" audience is 100% normal! I am almost 30 and I still watch cartoons, especially ones from my childhood, and my sister is 33 and she watches all kinds of cartoons that are for kids. You can watch cartoons of all kinds at any age!

[@ek4804]

Omg, yes! I’m 27 and if I’m ill or just not feeling okay, I’ll watch cartoons from my childhood. Watching Baby Looney Toons helped me calm my anxiety before going in to work in the beginning of the pandemic.

[@LifeinBonnieland]

I agree! I'll be 31 next week and I LOVE when my little nieces and nephews ask me to watch Octonauts, Mickey Mouse Clubhouse and all the other kiddie shows. 🙌💜🙌💜

[@AnoraJohnson]

Absolutely! My whole house watches My Little Ponies and classic Powerpuff Girls a _lot._ Mostly for me. And I'm very much a grown up. 😊

[@NLnaLovesU86]

Same and I’m hooked on Molang on Netflix lol 😆

[@kittyewing9063]

Same! I love cartoons still- and I’m 28!

[@RolandSchlosser]

This guy needs an award or something, he's precious.

[@cactuscallie5090]

Yes... Sometimes when I watch his videos I think he is a bit dorky. And maybe he is. But he is also a freakin' angel here on Earth. Such a huge heart.

[@epicpotato8507]

He does seem dorky sometimes because he takes the initiative of being silly to put kids at ease. A lot of people are too insecure to let their inner dork come out.

[@sailormoonXx]

@@cactuscallie5090 I never felt he was dorky I felt like he was so different and in a good way especially for his audience and interviewees

[@HeathBlythe]

I can think of one person who got a Nobel prize very unworthingly. Chris should get the Peace Nobel Prize.

[@mak8422]

@@HeathBlythe who?

[@norrkopingman]

Seizures really sucks. You feel fine, then all of a sudden there's "nothing". Complete blackout. (This is probably how it feels like to be dead, or how it felt like before you were born into this world.) Then your consciousness comes back slowly while you are hyperventilating, and you don't know why. When it's all over, you don't know if it's been 15 minutes or 15 days since you felt fine, because your perspective of time went completely out of the window during this process. I haven't had a seizure for ten years now thanks to very effective medication. (I even have a drivers license!) Some are not that lucky though, which is one of many reasons why neuroscience has a long way to go.

[@VitalMusic217]

Dont you dream during them?

[@eileendoherty2836]

Maybe magic mushrooms would be worth looking into 🙏🙏🙏

[@rozimemes5957]

omg congrats!! if you wouldn't mind sharing which medication worked for you? my younger brother has epilepsy and sometimes I worry about how it will effect his future. there's been issues with his medicines before :(

[@nixier6693]

What medicine ? Klonopin is all that has ever worked for me but I got off of them during my pregnancy I had my son dec 31st I do not want to far back on it tho or any benzo bc breast feeding

[@shannimonet]

I haven't had a seizure 4+ years now, it's crazy when you are aware of it

[@re_i_gn]

Her mentality is very mature for her age. I hope she continues to find things that make her happy. :)

[@MountainJohn]

She is gorgeous. I bet her parents are proud to have such a strong and well spoken daughter.

[@ozzydude]

@UCsZFMuSNhBJFghWAC2Oyglw Be realistic? Your comment is so unnecesary and out of place. You can feel it? Shut up. You don't know what these parents need. The comment just stated that the parents must be proud of their daughter but here you are talking "the truth" about people you don't know.

[@deactivated-78936]

@@neena8918 He was actually not responding to the original nice comment - he was responding to a rude one that was deleted.

[@neena8918]

@@deactivated-78936 ohh good tysm, sorry

[@MountainJohn]

@@ozzydude I reported the original comment. Thank you for sticking out there

[@laurabloom8745]

I would recommend asking her if she's having fun rather than if she's okay all of the time. You're still checking in with her, but she has the freedom to talk about her experiences.

Yes!!!! :)

[@catsrmylyf]

Wow, this is very smart! I related to Haley's annoyance with the constant "are you okay"s (although the reasons people check in on me are different, anxiety & autism). I felt this way a TON as a teen! (And still do, occasionally, in my late 20s.) I've had a hard time putting my finger on "why" all my life, especially bc I understand why they ask so often. This reframing of the question helped me understand a part of that feeling: constant "are you okay"s can feel like reminders that I'm more frequently "not okay" than most people are. But sometimes you want to forget about those problems for a little while & just be a human doing a fun (or normal, mundane) activity 😊 I'm going to keep this phrase in my pocket.

[@Soreign_]

That's wonderful! It would be so good to educate people on that!

[@bradklein3519]

Priceless

[@clarasokalski7836]

I also think that asking "how are you doing/feeling?" Is also a good neutral question :)

[@thehollowcemetery]

Haley seems like such a nice person and I'm glad she is trying to bring awareness to seizures.

[@KrysBowbrick]

Me too, I don't think the is enough information on seizures, I have Epilepsy too, can't remember what type

[@thehollowcemetery]

@@KrysBowbrick Ph really, yeah my mom has it too and but she has the silent ones where we never know when it happens but it does ;-;

[@KrysBowbrick]

@@thehollowcemetery Ah, absence seizures, those are the ones I have the most

[@samg873]

@@KrysBowbrick those are tricky to spot

[@KrysBowbrick]

@@samg873 That is probably why mine hardly ever get dealt with

[@namidakoh1027]

Her voice is so peaceful, I would listen to any stories she reads during my bed time! Hearing this interview literally melted my stress away ❤️❤️❤️

[@0r0r0]

I usually don't stay around for videos this long (adhd) and I was just wondering why tf I was still here and tuned in. Went to the comments and found this. I agree.

[@adrianmalkovich7101]

I absolutely love her voice. If she recorded stories, I'd listen to them every night, I'm pretty sure she'd cure my insomnia immediately.

[@user_kH9bw3ns1]

OMG UR RIGHT! ME TOO! please please please please

[@vamvam7690]

She has such a lovely soft spoken voice, it’s very calming to hear I was wondering if anyone knows why her voice has that unique vocal pattern to it? Why she held onto some words longer than usual and added the -ah sound to the end of many words? I actually really liked how it sounded, sounds quite melodic but I just wondered if anyone knows if it is a personal quirk or to do with her condition at all? Loved this interview, what an awesome family :)

[@kadijaesther1808]

@@vamvam7690 it seems like words ending with a hard consonant sound get the added "uh" or "ah" to the end, whereas it seems like words that already end in a vowel are easier for her to end naturally.

[@Emetris]

"Anyone that has seizures just stay calm and dont worry about it. Your life will come." What a strong, lovely and reflected human being she is!

[@RachelD077]

she is so self aware.. i figured she was older than 14 honestly. her bracelets remind me of when i was around her age i used have bracelets nearly up to my elbow lol. chris you’re awesome! so happy we have comments 💕

[@robdajuiceman1328]

Same here, much wiser than most 20 something people I know

[@moodyblues7144]

I thought she was about 16 , she's like me when I was her age (im 22 now)

[@katinahoffman5548]

I thought the same

[@gatesford7481]

Yes she has a cool, artistic flair and is a very deep person. I was also very into magical creatures at age 14, 15, 16, its better being into that than sone things, shes a put together young person I think.

[@NathanMcKitrick]

Aww this girl is so sweet and genuine. She's great at expressing her thoughts and feelings.

[@ernestsmith6879]

What is her Name? She did not say

[@NathanMcKitrick]

@@ernestsmith6879 I looked in the description. It's Haley!

[@ernestsmith6879]

@@NathanMcKitrick well I can't find it.

[@martinadrianarcenas867]

all of the persons sbsk features are.. and one common theme sadly is that they all say that if people gave time to know them more and actually talk with them, people would know a whole person behind the disability.

[@NathanMcKitrick]

@KY5 [8th Main Account] dang bro, I'm sorry you feel that way. I can see how you can come to such a conclusion, though. I suppose it all comes down to the value that you see (or don't see) in human life.

[@jamaljimenez506]

This is so wholesome!! Glitches is such a creative name for fast-paced seizures. She got that from Vanellope on Wreck-It Ralph, right? So cute!! 🥰

[@brycejarvis1577]

Yeah I bet that's where she got it from

[@aaronjames3228]

Lol

[@twylenb]

I'm also someone with epilepsy. After surgery, I haven't been getting any physical seizures, just mental, like language cutting out. I always explain to people that they're like glitches: Language.exe has stopped working. It's an easy way to explain the experience. Part of your brain glitches, and you have to wait until it reboots or loads.

[@MooCowPoopPoop]

Yeah I think that’s where she got it from! That was the first thing I thought of.

[@Slawsers]

She even looks like her lol

[@joshXnovak1]

Haley’s speech cadence is so interesting. She’s got such a sweet voice, and hearing her repeat or draw out certain syllables doesn’t come across as her struggling to speak. It really evokes a feeling of her working through the various mechanisms that go into speech and adapting where her body limits her. Like she’s actively finding a workaround.

[@Bbpierced]

Have you watched the making of Forest Gump? Her speech sounds exactly like how Tom Hanks explains how he chose to speak like how little Forest speaks irl. Very interesting. I then wonder if her speech annunciation is due to her brain surgeries or maybe from the trauma from the seizures? Such a beautiful soul she is.

[@phalanges3647]

@@BbpiercedInjuries to the inside of her mouth, too. But seizures can also damage your brain

[@reginacruz2900]

If you listen to Italians speak English, you will notice a similarity.

[@reginacruz2900]

If you listen to Italians speak English, you will notice a similarity.

[@reginacruz2900]

If you listen to Italians speak English, you will notice a similarity.

[@ida.wendigo]

I'm convinced she is a real mermaid 🥺💙 She is way too precious and sweet!

[@justincase3828]

Hello Haley. I've had seizures since age seven. I'm 62 now. I never had any brain surgeries. Doctors never knew what caused my seizures. It's not epilepsy. But they had to give my seizures a label so I could get medical care and meds. They never found a brain tumor and I still need meds to control the seizures. I've been on the same medication for over 50 years. A low dose only 60mg per day. I just retired from work in the past year. I worked for 38 years as a nurses aide full time in hospitals and nursing homes. I also got married and in March we celebrated our 36th year together. I love being in retirement. We have less money but more time to be together. I don't have to tell you to never give up. Thank you for all you do.

[@SpiritoftheForest]

Awwwww, wow! That warms my heart to hear your story. I’m so glad you’re here, and it sounds like - despite the unknowns, questions, and coping with your seizures - that you’ve been able to live such a wonderful life so far with your relationship and work. Still plenty more joy to come; I wish the best for you 😄

[@kentuckynanasaves1903]

So Awesome 👏❤️👏, Congratulations on your achievements, God ✴️✝️✴️ is Good 🙏❣️... I been wit my husband 33 years this month, married 29 in December 👀💭❤️❣️... So happy for you guys ✨⭐✨❣️

[@sunroomz220]

I have the same case mine started age 12 29 now only one in my family with epilepsy I think it's labeled as juvenile onset epilepsy,

[@perpetua111vv]

Thanks ♥️🙏

[@SweetUareDesi]

Has your lifestyle changed ever from your condition??

[@laurenmadison1573]

Speaking of mermaids, she looks like Ariel’s daughter, Melody!

[@Quiensoyxd99]

I was thinking that too

[@thefakeyangban]

Yes! She's so beautiful

[@missannaliese]

I hope she sees this comment! 💖

[@alistewart807]

She totally doesssss ❤️

[@DemonicaH3llsing]

Yes she is does❤

[@lilabrat]

I live with chronic end stage kidney failure and am on dialysis every day with an ostomy bag and I’m 25 years old, I COMPLETELY understand when people ask “are you okay” too much. It’s almost as if people can’t see past my disabilities. I feel you girl, people just are worried and care about us but it does get annoying LOL!

[@ann1ka_]

i totally get what you mean!

[@HRwoeking]

Oh I understand that one. On top of that (can’t explain my situation in this comment but ) I have episodes where my heart rate goes through the roof and as a result I sweat profusely for like 5-10 minutes and people say “are you hot?” And it makes me want to scream!!! Even though I know it’s just through concern.

[@kiara6237]

I understand that one too :/

[@LoveFitsAll]

You. are very strong...

[@lilabrat]

@@LoveFitsAll Aw thanks so much, means allot. I’m glad to see others can relate with me too💖

[@helenjoy6316]

Hi Haley, I have seizures too! Im a mum to two teenagers and I have a lot of disabilities so i use a wheelchair. I don't enjoy having seizures but i do like the fact that having them makes me better able to understand how to empathise with other's who may have their own issues. You are a wonderful young woman and it was a pleasure to get to know you a little! ❤

[@joetiger5892]

Haley is so pure. She is beautiful and smart. You can sense that her mother loves her a lot. I wish Haley a lot of success and fun for her goals and projects!

[@shae349]

I'm turning 18 in less than a month and I watch Octonauts every morning. It's a good show and they really do give a lot of information about the creatures. You're not alone, Haley :)

[@mvannorden02]

Happy birthday!! It's a little bit early but I couldn't help myself lol🎂

[@veganteacherlover]

I love octonauts

[@outoforder8791]

I'm so glad I found this comment! I used to watch this show every morning back when I was in 5th grade, but I had totally forgotten about it until now. I was already around 10/11 back then, but I loved it so much. I'm 20 now, but I would still totally watch it.

[@shroomiverse]

Same ❤️ I have a two year old but when I was in has, watched cartoons every morning and still love them

[@rachelhakim700]

I have been out of high school and college for a while and I still love watching Arthur, word girl, other cartoons.

[@mattheisen77]

I can say this channel helps me a lot. I always had Tourettes sindrome and when i found your videos 1 year ago i started to think about not being shy or hiding myself from society... I decided to let everybody know what i have. Im feeling great lately because people love me the way i am, even more now that i feel confident with myself and living with the sindrome became so much easier. Haley is a wonderfull person! She is beautifull as well! Im so proud of all participants in this channel. They tell us how they feel! Here they have the chance to tell us what they like or not about people that meet them. To the admin team, thank you! And keep up this awesome work you guys do! Much love! ❤

[@GennaFits]

My son has Tourette’s and it helps him so much to see people, especially guys, with Tourette’s being their authentic selves. Keep it up, you’re a role model to people you don’t even know 🖤

[@mattheisen77]

@@GennaFits Thats so nice to hear! Good thing we can count on our parents to help us getting through the tougher times. People like you that understand the sindrome without misjudging it are what we need! Thank you! Tell your son i said Hi and that he has a new friend here in Rio de Janeiro, Brasil 🇧🇷❤.

[@plush_nerd3437]

@@mattheisen77 Também sou br, e do RJ! Um prazer te conhecer mano!! Não tenho tourettes, mas tenho um transtorno chamado tricotilomania, além de ansiedade generalizada e depressão. Ver pessoas como você e a menina desse vídeo me ajuda a me sentir melhor comigo mesma e mais encorajada! Obrigada!

[@mattheisen77]

@@plush_nerd3437 Que bom ler isso! Fico feliz por poder ajudar e inspirar outras pessoas! Somos pessoas fortes e merecemos muito carinho! Espero que um dia o mundo entenda melhor que somos pessoas como qualquer outra, com nossas particularidades e que elas não afetam nossa vontade de viver e se divertir. Se desejar, podemos bater um papo sobre o assunto, trocar idéias... Sempre bom ter um apoio a mais de alguém que entende das nossas enfermidades.

[@plush_nerd3437]

@@mattheisen77 claro, seria bem legal!

[@heatherblaire3269]

When I had my brain surgery at 17, I also got tired of my mom asking me if I was okay and I would constantly roll my eyes at her hahaha! Haley really took me back Loved seeing this! Shes a light

[@BigDraco123]

I would rather have a mom that cares too much rather than one that hardly cares at all lol

[@overgrownkudzu]

@@BigDraco123 obviously it's better to have parents who care but you can't blame a teenager for wanting to be a bit of a teenager

[@sydneyshermanna]

Hi Haley, I'm 22 and LOVE the Octonauts, my sisters and I watch them. I also went to school for marine biology (the ocean is so cool!), but now I work with amazing kids like you (which is totally cooler!!) I actually also learned how to care for their seizures today and your words have reassured me that I can help.

[@jenniferschottler5435]

Haley does such a great job explaining the technical aspects of her seizures and the personal side of how they affect her. So many people are learning so much from her.

[@riobrasilsambashowssambist1453]

I learned a lot from her too!!!

[@God_of_Ramen]

She is running on pure courage. It's hard to see at first, but you realize it when you see how her mom looks at her. Took brain surgery like a champ. Nothing but respect for this person.

[@yvonneboaten8289]

Three brain surguries

[@abriverrat]

Chris is an angel of a person. He truly knows how to connect and communicate with everyone. Bless him

[@NiteDriv3r]

Nah he's just milking these losers for money

[@Pixietoria]

@@NiteDriv3r It's always a good thing to be skeptical but you can tell that's absolutly not the case. The fact you call disabled people losers shows how little you understand the world.

[@NiteDriv3r]

@@Pixietoria Like u didn't just watched this losers death get milked for money

[@barackputin]

@@NiteDriv3r You're salty

[@NiteDriv3r]

@@barackputin IT'S TRUTH

[@nancykahn4125]

She has a poet’s soul…what a beauty…inside and out!

[@miguelhuerta6977]

I could definitely listen to audiobooks with her voice for hours. It's such a calm and soothing voice

[@cousinmajin]

The movie she was talking about with the girl glitching was definitely Wreck It Ralph! That's so cool that she could relate to the character and use it to explain herself to people. Representation in fiction is so important ❤

[@TransgendrAceWithGayestOfGrace]

Oh my goodness, you’re right! It’s so cute how she also has physical characteristics that resemble the girl in the movie, too. It is so empowering to see yourself in a character.

[@legendofayda]

My thought exactly

[@kristicollett7887]

She's precious, so gentle and sweet. Beautiful young lady, indeed.

[@kristicollett7887]

The love for mom... hits me right in the feels. *tears of joy*

[@jennyn5692]

I love how Haley describes the ocean as secretive. That's perfect. The ocean IS secretive. I often think about the kinds of fish or other creatures and plants there could be in the depths of the ocean that we've never discovered.

[@TheWhiteWolf_bf2lm1]

I really loved that she says that if she falls from the rock, there's always something to hold her. We can transform that into what she goes through in life. Not only her, everyone. It's ok to fall, there'll always be something to hold us.

[@Sophicx]

That is a very sweet analysis.

[@user-yy4zb9fe1b]

GOD the Father & creator of the universe. He made us all special, and he made every one of us perfect! He is the Almighty Protector. He is our harness when we fall

[@jodihafner6348]

I felt if I was listening to my very own daughter!! My Jayla (17) also has severe epilepsy, Autism and a reading learning disability. I ask her about 100 times a day “Are you ok?” And I can see in my daughters face, I also drive her crazy!!! But it’s just our love, and wanting to make sure we r prepared for any situation that may occur. What a sweet young woman 👩🏻 you are in my prayers luv! God bless❤️

[@palmtrees2420]

Have you ever tried cannabis oil (Rick Simpson Oil) with CBD and THC to treat her epilepsy? I've seen it work wonders for people with epilepsy and cut the seizures down tremendously. I've been spreading the word to comments where people mention they have or know someone with epilepsy in hope I can maybe help someone.

[@kbkbkbkb.]

as a fellow epileptic human, i feef grateful that i have temporal lobe epilepsy and can function for the most part - but i have SUCH the same interests as you hailey. I feel our brains are wired to think so much deeper than those without epilepsy, we are special and should love ourselves for that. you and your mum are wonderful - i hope you both are well, sending love from scotland 💙🏴󠁧󠁢󠁳󠁣󠁴󠁿

[@phalanges3647]

Doctors don't know why I have my seizures...but I agree with you. I wonder if we have connections in different parts of our brain than people without?

[@c.hlorine]

If you don't mind me asking, and I ask this because I'm suspicious I might be experiencing the same thing, do you feel your seizures coming, and what does that feel like?

[@kbkbkbkb.]

​@c.hlorine hey, sorry I know this is a couple months late but I'll tldr; I will usually experince wee "blips" - very much like Haley experinces, for me it feels like that feeling of "falling" when falling asleep. Or like when you are walking down a set of stairs and you think you're gonna miss a step and get a fright - then feel a little dizzy. Actual seizures then go into a feeling of absolute dread in the pit of my stomach, a feeling of dejavu, specifically like I'm experiencing dreams I've had before, my body feels like it's burning from the inside out, I get dizzy/ am often sick then ill get a wicked head/ neck ache and feel super out of out for a day of so. I was diagnosed at 19 - defo contact your gp/ doctor if you can! and if you want me to go into more detail I can do so 😊

[@atlastsunrise]

Haley, you have such a calming voice and such an articulate way of speaking. It makes it so fun to listen to you ❤

[@jeanhansel5805]

I love Haley's voice and agree it's very calming. I would never get tired of hearing her speaking.

[@jeanhansel5805]

@@Gameboy-Unboxings Me too!

[@FleshGolem420]

I get the sense that she actually thinks about what she's going to say before she says it which is remarkably rare.

[@Rhiannon.Moonchild]

I agree. She is a wonderful speaker.

[@jantarasoff5744]

Thank you Haley for this interview. My daughter has a brain that did not form just right as well and she has always had glitches and seizures too. She is not able to communicate as well as you do and I really appreciated having you talk to me about what you think about your seizures. You are a good friend to so many people that you don't even know.

[@jessicamontaperto810]

Check out John Hopkins, For Laser Treatment.,

[@Maddd17]

“Your life will come.” is such a powerful message, thank you Haley.

[@MyChannel-ct6gr]

"A seizure is always a hard thing to see, and doesn't matter how many you've seen." No truer statement can ever be made. My youngest, our daughter, has a seizure disorder going on 15 years. Watching your child under seizure is the most heart breaking, powerless moment that I experience. These experiences are the same, every time. Haley is a dear, and beautiful, young girl with an incredibly loving family. Thank you for this video!

[@lilian9314]

I would listen to a podcast of her teaching us about mythology and mythical creatures and the ocean. I’d also 1000000% hang out with her and watch cartoons and I’m 29. Girl, live your best life and don’t let anyone tell you you’re too old or whatever. Also, you can tell she is so smart and understands what’s going on, it’s just her processing turn around time is a little longer. The academic age thing is ridiculous and you could tell she was shook when they were talking about it.

[@Kells1379]

Such a beautiful, sweet and strong young woman. May God fill her life with all the joy she deserves.

[@le_camioneire]

Really sweet girl and family. Chris, whenever i see your videos i suddenly remember that we are all here just to respect and love each other. I feel in peace watching your videos, and its a wonderful feeling. Thanks for everything.

[@sinclairzz]

haley, i’m autistic and one of my special interests is the ocean, so thanks for some interesting facts in this video!! don’t mind anyone who says cartoons are for kids - i’m 18 and i love my little pony lol

[@theflowerhead]

[@thuliramasodi7417]

Lots of love South Africa

[@itsmelive]

Yesssss ADHD here with a special interest in marine life too this interview HAD ME and catch me looking up octonauts after I finish this interview

[@heatherhalloween974]

Me too I love the ocean

[@amammaof2]

My daughter and I watch My Little Pony too. She’s 19 and I’m almost 47. It’s such a great show! ❤️

[@nickybaker1338]

I was diagnosed with epilepsy recently - at the age of 57...Haley, you are an inspiration! Thank you for sharing your experiences so honestly & openly. Bless your heart 😍

[@csk362000]

Wow, that is very unusual. Mine started at 13 but have not heard of many people that started that late in life. Interesting.

[@hollyjollyxmas]

I liked when her mom said “that’s true, sorry” because she made sure her daughter knew she was validating her pain

[@leah1590]

I really hope she scrolls through the comments and sees all the love!

[@seizinghope6588]

I have read them to her! She’s thrilled at the support and kindness!

[@magdaleneofdivinelove5984]

There is book called "What if They Knew" by Patricia Hermes about a 10-year-old girl staying with her grandparents for the summer and is appalled to discover that her parents' prolonged stay abroad means that she must start in a new school and somehow hide the fact that she is an epileptic. I am 48 years old and this book is still one of my favorites.

[@nancyd510]

I have the same book at home, I saved it for my daughters to read one day. It’s where I first learned about epilepsy, it’s a very well written story!

[@magdaleneofdivinelove5984]

@@nancyd510 ISame here. and it is a great story! I need to get another copy. I gave it to a friend who has epilepsy and she really appreciated it.

[@analuisa1214]

Thank you for letting us know, I'll see if it is available in my country because I think my sister would like it as she's one semester away from highschool graduation and going to college, kind of a similar situation

[@SergioMnl]

Dude these videos. I'm not even 5 minutes in and im already crying

[@WheelzGaming88]

Literally having to use a wet rag to clear my eyes every 30 seconds

[@alisonrussell5728]

Awe

[@b1k2q34]

Why are you crying?

[@terrigarcia1958]

No one wants you to cry about it or feel pity. It is to educate and find solutions not to invoke or solicite your pity

[@Tranquility32]

I love when she talked about the ocean. She’s such a sweet, sweet girl. My brother outgrew grand mal seizures around age 17, and my mom has a seizure disorder that is VERY well managed through medication (thank goodness). I wish beautiful Haley and her family love, health & happiness always. God bless her.

[@Deer548]

I cried through this whole segment, What a wonderful, sweet, thoughtful girl! Anyone would be proud of her! She’s so intelligent and extremely informed about her condition. She taught me things I never knew about seizures! The relationship and love between her and her amazing mother melts my heart. She’s beautiful.💕

[@isabellerack4987]

i feel that i have so much in common with haley. i have a rare neurological disease called autoimmune limbic encephalitis and because of it i have epilepsy with aluccinations, amnesia, attention deficit, personality disorder, dysthymia and my mama is so kind to me just like haley's mom is to her and i love to see that more people with problems like mine can feel the same love that i feel at home.

[@pyramidhead2874]

Sweeite. You're the reason i believe in humanity. Your courage is truely impressive. We are all proud of you

[@broughtontaylor8142]

Thanks for sharing your story with us! I live with ADHD and generalised anxiety and this channel has helped me become more confident about my disabilities. Sending you love and support!

[@sannaslife6395]

Hi what happened to your KZbin videos? Are you okay?

[@broughtontaylor8142]

@@sannaslife6395 I’m just taking a mental health break. My anxiety has been pretty bad recently. Thanks for asking!

[@genesises]

@@broughtontaylor8142 Hello! I don't mean to say this applies to you and it might not help at all in your current situation, but I've personally been dealing with anxiety issues my whole life, and i really recommend watching the 2 first videos in this playlist. YT/ WBAFPbypyn4. I found them to confirm alot of what I was already thinking which in turn helps alot with making the ground under my feet just a bit more solid ^^

[@broughtontaylor8142]

@KY5 [8th Main Account] I’m sorry, but that’s pretty ableist to me and the rest of the disabled community.

[@marinacordova9314]

Don't get me wrong but I think that adhd and anxiety are not disabilities! Anyway, I very much agree with your comment. The encouraging stories of the people here have helped me stay strong despite my situations...♡

[@13crowintuitivestarot]

She’s so pretty and calming 🥺🥺💕 I love her personality!! & her love for mermaids!

[@BigTalkAstrology]

My sister is 26 and I am 30 and we both love watching cartoons! And we both believe in magic too! There's something so special about your energy. I think you're pure magic! I loved watching your interview and learning about sea creatures, Haley! You shine so brightly, anyone would be so lucky to be your friend!

[@SzulcSzymon]

Ok, this girl has such a soothing and calming voice I could listen to her talk just to relax.

[@kjbennie9245]

Chris brings out the happiness in people. Whether u call it "dorky" or "geeky" 😊😊😊. He simply does the job well. Most of their conditions are "quite serious" so for him to bring out the smiles, the laughter and comfyness is definitely pure joy for us viewers!! and at the same time educating us too!! what a great talent he is!! Bravo 👏👏👏

[@Likeariverruns]

This is the first comment I’m leaving since comments were re-enabled and it couldn’t be a better video because from the first minute I loved Haley (and her mom and Sophie!). I can tell her and I would get along great, I’m so jealous of anyone that gets the opportunity to be her friend. Such a fun, wise and beautiful soul. Another amazing video SBSK. ❤️

[@barbaravalliere4957]

I absolutely love Haley she’s so inspiring and beautiful! I work in the hospital as a R. EEG. T. We monitor brain activity for seizures and epilepsy. I always try to talk to my patients about their own life and what their interests are rather than focusing on just the test. What an amazing soul Haley💜

[@Deryn-Emily]

Haley, I'm nearly 27 and I still LOVE cartoons! They are really funny! I could absolutely spend all day watching a good cartoon series! I feel where you're coming from when you talk about being the only one in your family. I have EDS, Autism, learning difficulties, chronic pain syndrome among a number of other things. I am the only person in my family who has medical or learning issues and it can make you feel isolated and upset sometimes, they don't really understand even though they love you lots. But I promise that as you get older you will find people who are very similar to you and understand those feelings because they feel these too. You're awesome and are into some really cool stuff!

[@absa9115]

woah are you me?😂 exact same diagnoses

[@lizmakeswhatever]

She's beautiful. "Your life will come" brought tears to my eyes.

[@absa9115]

same! i got actual goosebumps so many times too with her sweet demeanor and bright intellect ❤

[@andrearouillard7668]

All of the obvious things aside (she's so smart and strong and brave!) I absolutely adore the colours in this video.. it's a bit of a random thing to pick out, but all the soft blues and whites and creams against the stark contrast of her hair is just so visually pleasing and soothing

[@camillastacey4674]

I thought that too

[@meisteremm]

This was honestly hard for me to watch. My mother had Epilepsy with frequent Grand Mal seizures that would often leave her exhausted to the point of sleeping all day long. Growing up, it wasn't something that I really felt the need to learn much about because it was just a fact of life for her, myself and my siblings, but now I wish I had bothered a little bit more. For Haley, I can say this...I'm so happy that you have a positive support system, good people around you and that the medication seems to be helping. I really feel like you're going to surprise a lot of people and I wish you and your family all the best.

[@gregadams589]

I've watched this video so many times now.. Studying med and psych, Just so drawn to Haley and her optimism!!!

[@Scoobiekittydoo]

Me too Greg she's such a kind and courageous person, a person to admire :)! I wish you luck, I am so happy a compassionate and invested individual like yourself is getting into the field and hopefully one day my colleague! Take care

[@nerdcave0]

Amazing kid, incredible mom! Chris asked a lot of good questions here too. Going from 50-100 seizures/day to 10/week must be so encouraging. Hopefully more discoveries are made and that number will eventually be zero. If there's a way, this girl's mom seems like she'll find it.

[@jessicamontaperto810]

Laser treatment d’ do that!. Someone can help fundraising for that!.

[@craigkelly4278]

This video helps me realise that I can beat my Cerebral Palsy and epilepsy I will control it and not let it define me. This Young lady is beautiful inside and out thank sir for your work

[@3lement2010]

I'm glad my epilepsy never got this bad. Hopefully it never does. She's a warrior for going through this.

[@nataIieatbest]

||-//

[@analuisa1214]

Usually after teenage years they just stay the same, it's likely at these years that something could change, but after your brain finishes development unless you hit your head pretty strong it'll probably be the same for life. My brother had it worse at 15-16, but now at 21 he is seizure free for more than 2 years with medicine, something that wouldn't happen during his development.

[@3lement2010]

@@analuisa1214 I'm glad he found a medicine that works. I had my first and only seizure at 6 and I'm now 23 years old. I dont even know if I'm even considered epileptic anymore. When you bring up brain development it does make sense. Didn't think about that

[@darcihoudeshell2588]

I'm 58 and was diagnosed with epilepsy when I was 3. Haley I'm so proud of you! It's not easy but we have to keep on keeping on! ❤😘❤

[@shesaurora9482]

She's like Ariel the mermaid so soft spoken and naturally gorgeous!!! Definitely would make such a cute princess cosplay!!!

[@Arinera]

Haley is so well- and softspoken, it's actually very soothing listening to her story 😊

[@Fool_of_a_Toque]

Can we please appreciate how much Haley’s hair looks like a mermaid’s? There’s definitely a magical quality to those waves 🌊 🧜‍♀️

[@ReidTheNintendoPainter]

I have autism and I can confidently say I feel the same way Haley feels about people asking 'Are you OK' over and over again! Once is fine, twice is alright, but asking it over and over again just gets annoying!

[@PennyJackson123]

I have autism too and I feel that way too. I think Haley is kinda cool, and I like that she has her own special hobbies and interests. I collect things and I love sea creatures as well.

[@analuisa1214]

Being autistic is also being treated as a child 🙄 like we don't have the ability to feel and do stuff and communicate, it's very very annoying

[@Slawsers]

True I’m out of school but when I was in final year of highschool I had a autistic friend named Adam and we had full conversations about cool non boring topics like marvel and cartoons the other class mates baby talk to him even teachers and acted like he can’t have cool convos or function

[@Purple_Box]

But you have to understand that parents do it because they have to know how things are to be able to react when needed.

[@vildekokosbolle]

I'm hearing impaired and even though it's completely different from autism in every way, I 100% recognise myself in what you're saying!!

[@Bludgeoned2DEATH2]

I love that the comments are back cause I can write that I'm so proud of Haley and her courage throughout all of this and she'll most likely read it :) keep fighting Haley, we love you

[@m.c.b.2022]

Is it just me? Or does anyone else find her speech and voice kind of comforting.

[@garrett621]

Yes, she's so calming. And I noticed that Haley seems very smart and discerning at a level above her age even though she might be at a a slower academic pace. She's advanced in some way I can't describe. And very mellow!

[@Monica-gene1]

Yes I do. It also sounds like has an Italian accent.

[@dustygatrell-ru7tg]

​@@garrett621she's been threw alot of pain. Many times people like that are extremely empathic an caring people. Wich is ultimate wisdom.

[@Beefareeno]

Gosh she is stunning! Keeping learning about the ocean , have the joy mermaids have, and explore the secret unknown. Love Sophie!

[@tyreesetjjoyner1995]

Awww. Haley is so beautiful and gorgeous. Such a heartfelt person.

[@jode_ster]

As a mother of two kids with epilepsy, (my daughters seizures are from the sun so hundreds per day) I am really proud of you too, Haley! Thank you for sharing your thoughts and feelings. You are not alone. ❤

[@whychoooseausername4763]

Haley may not be great at math, but she's mature beyond her years.

[@Likeariverruns]

exactly, way more enlightened and connected with herself/her needs than I ever was at 14. she’s a very impressive gal.

[@Judymontel]

Yeah, I agree with you and Paige T - mature, connected to herself and just a lovely person to boot!

[@arachnidfingers]

i loved learning Haley’s experiences with her struggles just as much as i loved you asking her about magic, her favorite books, and the ocean. i think that’s what really sets you apart, Chris - you do your best to let your interviews just talk about themselves outside of whatever disorder they may be dealing with, which helps show people that they’re more than their disorder.

[@totallynotbella4100]

She is one of my bestfriends in real life. I am so proud of you haley❤️

[@carynmartin6053]

Thank you for doing this interview, Haley! I can't wait to show it to my 27 yr old daughter who has a similar type of epilepsy, etc, so she doesn't feel so alone🤗😘

[@dralzgamer2354]

Gorgeous person, very tough fate. I’ll pray for them

[@strangesocks]

That last sentence is beautiful.

[@mellllll9]

Her voice is so comforting and kind. Such a lovely young woman !!!

[@karoline1574]

She's so intelligent and down to earth, I would be so proud of her too if she was my daughter.

[@jarfuloflove7320]

It's easy to overlook how articulate she is. Imagine how formidable she would be without the adversity of her condition.

[@janetleeharrison]

I love your speech, Haley! When you talk, it sounds like you are speaking English with a bit of an Italian accent. I love it!!! Thank you & your mom for sharing what it is like living with seizures. Stay strong & determined because you are obviously smart. Keep studying!🥰

[@maggie742]

I have epilepsy and I didn’t know that it could be this catastrophic. she’s so incredible 💞💞💞 I am keeping her in my prayers🥲

[@jaxxiet5851]

Me too, I was diagnosed at 16 and I’m 42 now. I had a period that was kind of rocky when I came off birth control and I didn’t really watch my drinking but now I’ve been seizure free for four years. I cannot imagine how she feels, praying for her as well. 🙏

[@maggie742]

@@jaxxiet5851 aw congrats! I’ve been seizure free for two🎉

[@jaxxiet5851]

@@maggie742 awesome! Wishing you the best of health friend! 💖

[@thuliramasodi7417]

God is above all never lose faith with him every thing is possible it's okay

[@thuliramasodi7417]

@@maggie742 Glory to Jesus i am waiting for that miracle and one day it will happen to my son God will heal my boy

[@AkaUnkown]

She looks just like a young Jennifer Connelly. Reminds me of the Labyrinth. Beautiful. My son is 4 and he has seizures and takes medicine for it. I’m so devastated when he has one. This poor girl has been through so much with hers I can only imagine what she and her parents go through. Thanks for sharing, stay strong and keep that wonderful spirit!