Grayson’s Syndrome (The Only Known Case in Human History)

whenever I make a new friend I sing a song for them Grayson Grayson Grayson Grayson Grayson great soon hey Grayson happy okay I'm really happy I came to yep what's your favorite part about hanging out together good good it's good what do you like having conversations and got there you're the best you're amazing is it easy to be your friend yeah why am I your friend okay you're the banner can't the banner you're the best and I'm so happy I get to be here with you today welcome to SBS K we believe that everybody has a story that's worthy of being heard when we listen to one another the world becomes a closer place and we all benefit together so without hesitation let's meet today's friend is there anything special about Grayson [Music] our baseball or wait no what listen we're not gonna let you miss the baseball game I promise it okay I already know what he's thinking how often does he ask about baseball every day all day he does not miss a game I'm thinking why think I'm thinking what you're thinking and I'm not gonna let you miss the Braves name is there anything unique about you oh nothing well do you want to be seen as a normal guy yeah ngo5 you you are just like me both like sitting down hanging out watching sports you want a large baseball together and no is that because we're friends yeah what are you most proud of Grayson for just his outlook in life I mean he he loves life he loves whatever we're doing doesn't matter he loves just just being there in the moment well can't you stop giving me the knuckle Palin okay and the banner and you're the best yeah how does Grayson get around the house um he rolls he rolls um any army girls do you like getting around the house like this he has extreme upper-body strength and he will take his forearms and he will pull his body across the carpet is it easy for you to curl like that yeah what is Grayson's diagnosis Grayson does not have a diagnosis he has a multitude of diagnoses craniofacial that's right is one he doesn't have like a syndrome that they were able to determine we had sequencing done of DNA and everything amazingly he came back normal so they never could really figure out what may have happened so the doctors determined because they've never seen a case with Grayson's anomalies put together in one child so they actually just call it Grayson's syndrome what is this what does it do but he has hydrocephalus and Chiari malformation craniosynostosis which is you know malformation of the skull yeah and he has cleft palate he's blind in his left eye well his right eye he does have 70% vision he has hand and feet deformities he have he has no bones in his thumbs but he loves to twiddle them yes you do and he has three toes on each foot he also has a sip Atal encephalocele which is where the brain the skull in the back of the head did not close therefore the brain matter pictures through the head are you a happy person or a sad person happy why are you so happy I'm happy we agree that we only make life-saving changes for him we don't want to change his appearance because we adore and love who he is and what he is if changing his appearance is something that he would want to do later on that's up to him this part is called a Mickey button and it was surgically put in and there's a balloon on the inside of his stomach that holds it in place so this part when you attach it and it's called a locking key you line it up and when you spin it it opens up the inside and you unlock this part so the feed can flow and then you hit the Run button and it runs the feed into a stomach I do oleh at night and literally watch him breathe and just thank the good Lord that you know we have to stay together and I hope we wake up in the morning together so it's a give-and-take do you have a hard time sleeping because of that yes I don't sleep I and most of the time I net for short periods of time throughout the night and I always make sure that I'm close enough to where I can feel him breathing do you rather have a lot of friends or a lot of money what would you do with it all tell me about your mom Wow yeah I bet work today what you think oh no no this half-day do you miss him when he's at work yeah and you do what what else Colin what does he text you guys are the best having guy time talking about sports yeah you don't play I'm let play sports this weekend when are you gonna play sports oh yeah do you play sports yeah do you wish you could know what sport would you play first I be kissing the ball you two brothers ever argue can you help me can I shock you yeah I don't know maybe I have superpowers should I try oh all right wait let me rub my hands together all right I might have electricity powers now let's see if it works it didn't work oh can you shock me what's the most important thing you learned being Grayson's day how to love more how to love people more how to love my neighbor more how to just do everything with more kindness and more love towards everybody you know what I'm having such a wonderful time being with you do you want to spend the whole time together yeah what should we do together how would you describe Grayson's love of baseball uh he is infatuated he eats sleeps and breathes baseball yeah I mean he watches a replays like their life don't you and I get mad at the outcome if it's not the way we want it - are you serious yeah what what's the trophy for you got a football in your room yeah what's the most rewarding thing about being grace instead being able to see him smile picking at him watching him grow you know the milestones I hit those are the most rewarding moments they mean a little more been when we was told that he wasn't gonna make it so it definitely makes it worthwhile to see those special moments during our pregnancy we were told that we were going to have a healthy seven eight pound baby boy and all the ultrasounds had come back normal blood work normal and when Grayson was born you could clearly see that he was not normal was it like when you saw Grayson for the first time I mean I instantly fell in love with him but I guess every parent can say that I don't know is it's just that moment where well you know my son is here now let's must worked our hardest to get even the best care possible it's gonna be blurry for a second okay but it's gonna help it feel better does your mom help you a lot most of the children that have hydrocephalus Kyary even just some of the anomalies put together that he has do not really live past single digit years are you able to enjoy the present without worrying about the future there's always gonna be worry for the future I try to put that on the back burner because if I if I don't enjoy the present I'm gonna miss out so I have to be reminded sometimes because as a mother you get wrapped up and I worry and the fear maps and yes mama gets mad but I also you know you try to mentally prepare yourself for what could be but I don't think any parent could prepare themselves for anything such as losing your child or even having a child that's you know on a terminal status camera you want me to move it closer why all right you're the boss how about that yeah is that good thank two bros hanging out on the couch what was that normal an old man but guess what what I know how to dad - I think you're the best buddy yeah what's the most important thing for others to know about reason he is a person regardless what he looks like he's still a person you know everybody's different everybody has their own falls so he is all outside but he's still a person what's your favorite thing to do with your dad he's not hanging out with a friend the best sit him back having a laugh and a smile I think I'll have a laugh right now oh that was funny I don't know what is your biggest hope for Grayson's future um I guess just like any parent I would love to see him grow up and find a pretty young lady and get my age as he's grown and gotten older you want your iPod well you're just got to wait a minute you can't as he got older you get a sense of comfort and you learned that this is my child and that you want to stand up for your child and that you're you're proud of who they are so there's no longer that insecurity of oh gosh are they gonna look at him or stare at him or snicker you take him out and you want the world to see that it's okay to be different before we end our interview should we do one last big high-five bigger yeah Grayson thank you for being my friend thanks for watching SBS K click subscribe here to be part of our community then hit the notification bell below so you never miss a story you can even meet another friend here see you next time

Channel: Special Books by Special Kids

Views: 16,358,806

Keywords: Grayson's Syndrome, Hydrocephalus, SBSK, Special Books by Special Kids, chiari malformation, occipital encephalocele, Craniosynostosis, Chris Ulmer, Inclusion, Education, Special Education

Id: LAXwsHAKCZA

Length: 15min 34sec (934 seconds)

Published: Thu Jun 13 2019

Reddit Comments

[u/[deleted]]

I wish they would make an exception for their channel and allow comments. They were so heartbroken when comments were disabled on all of their videos. A lot of these kids and adults want to connect and make friends online, so if you guys want to reach out use the info section on the videos. They often link Instagram, Twitter etc. accounts from these people and I've followed up on a few to find out people leave insanely wholesome posts on their channels. Usually prior to these guys featuring them they have no comments or anyone paying attention to them on those social media accounts, so I'm sure it would mean a lot for them if you gave them a comment and a like. They are people just like you and me and worry about all the same silly stuff like getting likes, hits and views on our social media stuff.

[u/Mp5QbV3kKvDF8CbM]

Chris Ulmer is a beautiful human being.

[u/kingcal]

This guy is an absolute gem of a human being.

Some of the people he interviews with serious physical disabilities I have a hard time looking at. I couldn't imagine trying to have a personal, touching conversation with them the same way he does.

[u/FlREBALL]

Why can't i comment on this channel?

Oh right, stupid YouTube rule.

edit: It's because some people left sexual comments in a few videos where girls were doing gymnastics or appeared in some comprising positions. So this was YouTube's solution to stop pedophilia: ban all comments on videos with children.

[u/RodionsKurucs]

Even though I'm only 21 who probably won't have any kids for at least the next 5 years, I always think about the fact that I simply couldn't take care of a kid with mental disabilities or super serious physical disabilities like this one. Those people are really strong.

[u/[deleted]]

this really is a great channel

its a shame YT closed down his comments section

[u/DillBagner]

This channel always makes me cry

[u/thetruthteller]

Jesus that mother’s expression.

[u/SadDragon00]

If you haven't seen it, watch the Daniel episode. That shit hit me right in the feels.