Living with 4,000 Seizures Every Day (And Still Finding Joy)
Вставка
- Опубліковано 4 жов 2023
- Chase has around 4,000 seizures every day due to a mutation of the PGAP3 gene. Chase's family wants others to know that although his life may be different, he is still a happy person. Chase is also diagnosed with Mabry syndrome.
Support SBSK at / sbsk
Learn more about PGAP3 at www.moonshotsforunicorns.org/
I just thought of something I wanted to point out! In this interview I asked Chase "what should somebody do if they want to be your friend?" and he responded "Lightbulb!" At first I thought he was perseverating on the lightbulbs, but after a few seconds I realized he was answering my question. This reminded me it's always important to be fully in the moment and listen to those around me.
i thought of this too when i watched that part. thought it was lovely ❤️
You are such a good friend . You listen ❤
I laughed at that. If only we were all as simple to make friends with by offering lightbulbs as openers! haha RIP your camera lol but I appreciate your patience and flexibility as the family noted how importance it is.
The fact that chase has up to 4,000 seizures a day is shocking and painful glad to see he’s ok tho
Hi Chris wish we can meet you guys and greet you guys love your videos ❤❤❤❤❤😮😮😮😮❤
The fact that this family had to move a bunch of states over to get him to have 7,000+ fewer seizures a day with medical cannabis is mind boggling to me as a Canadian. It’s not “criminal” to take something that works.
The bane of politicizing something just to squeeze out a few more votes. Things get unnecessarily get wrapped in red tape.
I completely agree
Dad here - The good news is that it’s gotten so much better. We had to trail blaze to change the laws in Illinois because CO was one of the very few states that had legalized it. Within five years, there was pharmaceutical grade CBD available via prescription that we get from Walgreen. It took a lot of work, explaining what was going on, but Nicole really is undefeated in those efforts because Chase deserves as much help as he can get!
Welcome to the good old USA. Where people that need something to help them have a better quality of life can be considered criminal. This country really aggravates me sometimes.
I live in Canada too. I'm so glad these medications are available to us. My friends need it for their child and I need it for my husband. It has been live changing. I'm so glad Chase can take it.
His brother seems so kind 🥹
Such a nice family!
Totally. Such a nice brother. We'd all like to have one like him.
@@vintage6346I try to just like him to my brother😊
would you also want a brother that lies about you to hide his real thoughts?@@vintage6346
Often the "other kids " sort of get lost in the mix .......not evident here BUT it does happen ...MOM is absolutely glowing with sweetness and kindness ...I really like and respect her!
Allowing him to explore your expensive equipment proves to me that you're in this for the people, not the "likes".❤
The way he was so patient and let Chase try himself shows he really does care!
This channel is the GOAT. It's some of the best proof of the remaining goodness in our society/world. Truly beyond anything money could buy.
When he said “do you wanna spin together? I gotta loosen mine, and then we can spin” as he was spinning the lights! Chris is one of the kindest humans on earth.
He is an amazing human! The world is brighter with him in it!
@@darthbahnsen3832 Very true. Couldnt have said it any better. 🏆
There is a great saying I always remember about being a parent. "You bring them into this World, you should let them show it to you." That's the joy of all children I think.
WoW such a fantastic quote or saying! Thanks for sharing it.
Wow, I love that!
I don't get the quote:D Could someoke explain? What should you let them show you?:D
@@-AxisA- If I understand correctly, it's saying kids will often see the world differently from you let them show you what the world is like for them and help you find new things in it. So help them and nurture them by also letting them show you the world, although you created them, they will show you the world in a different way.
At least that's what I think they are getting at.
Thats true when someone is making a child and go 100% in for it don't be sad if the kid is born with stuff that are meybey not normal (meybey normal do i mean is like that doesnt happens so much) and take care off the child if he/her likes Music Electronics or cars or gaiming or School or whatever
Wow! So crazy to open the UA-cam App to a channel I followed back in college…. and see one of my favorite students! Chase is taking Digital Photography 2 next semester, and I can’t wait to see how excited he gets about our new camera equipment. Such a joyous student to be around- I’m so excited that you were able to interview him ❤
thats pretty cool 😊 im sure it was great to work with him!
Dad here - what a world we live in where this can happen. Can’t wait!
YO THATS AMAZING
I couldn’t imagine how difficult it must be to live with this condition, inspiring to see how strong this boy continues to be. I need to be more like Chase.
He has support. If he didn't...
I know right❤❤❤ I almost cried watching him. I love him so much
Dad here - on support, you are dead on. The Chase village is large and wide and Mom is superhuman. We weren’t really given the diagnosis - she’s the one who figured it out and orchestrates an army of doctors, therapists, care givers, family members, school boards, teachers and paras to provide a great quality of life.
Chris captured the essence of Chase and Nicole is the one who made the last 17 years possible to arrive at this moment in time. Support past that is an ever moving target. We have found one day at a time works really well and the path emerges consistently somehow. Or because Nicole finds it 😉
I figured out my physical diagnosis while researching a probable mental diagnosis.
@@grosstr99Are you Chase’s dad?
Chris, everyone who works with people with additional needs should watch your videos to learn exactly how it should be done. You were born for this role. Best channel on the internet, bar none.
Honestly Ive had issues with children and struggled to be around disabled children, but watching Chris's videos have really helped! I now know what to expect, how to act, how they and their families feel and its gotten so much better for me. I used to be extremely uncomfortable, but now Ive moved to more slight discomfort. Watching these kinds of videos gives you an insight and knowledge that helps you feel more at ease, so I definitely agree that those who work with special needs, especially those in healthcare, should watch Chris's videos!
@@Koselill Dad here - totally agree with you. I'm still uncomfortable in similar situations and Chris showed Chase to us in a whole new light that has made the time since almost brand new.
Can we talk about how the moms face lights up after she realizes Chris is going to let him fidget with his gear. 🥰 She must be so used to people saying “ no no don’t touch that” Chris. Thank you for what you do. 💙❤️💙❤️
The excitement of Zack after hearing the question “how would you describe your brother” made me smile .❤
Continued watching and my God . What a great guy
This is one of my favorite vidoes of yours. The way you treated Chase with patience and kindness when he was playing with your camera - was so genuine. Most people would have never let him play with their camera, worrying they would break it. You are a good person.
Dad here - I was sweating big time in terms of worrying about damage, but it was amazing. I’m glad Chris didn’t see our old minivan - the level of “fix” was very high 😂
@@grosstr99 you aren’t getting much attention for literally being the dad of the star of the video
@exploding_hippie thanks for the shoutout! Having conversations here and feeling love from around the world is something I hadn’t anticipated and has been a real gift to us too.
As a software engineer, with a mechanical engineer dad, your son has totally engineer energy. Keep his passion engaged dad! @@grosstr99
Chase seems like such a delightful person to be around. And what a great family he has supporting him!
I genuinely enjoyed watching Chase get up and asked Chris to bring back the lights! I imagine they were hidden to lessen distactions
Dad here - that would have been me. Chase definitely has a strong drive to go where he wants. The house is secured pretty well because of that but he just had to have the lights and Chris was wonderful about it.
@@grosstr99 I really appreciate you interacting with the commenters! There is always more that we can learn.
i love how interested in the camera he is!! you can feel his excitement!!
You can tell how careful he is not to break it also
Chris, the patience you have with everyone, especially when handling expensive equipment, is such a gift. Something I certainly strive toward. You’re a wonderful example and a great human.
I was going to say that, Chase put his fingers in the camera's sensor which is a real headache, but Chris didn't want to ruin his enjoyment of playing with/examining it.
Hi Chase! I’m so sorry you have to go through all these seizures, but I’m so glad you still find happiness ❤
It was so cool watching Chase
be in his own world and just be so into tinkering with the equipment lol
Chris, you make this old teacher's day every time I watch one of your videos. The way you connect with everyone (not just your interviewee but whole families) and adapt your approach to each and every unique individual is just inspiring. You, sir, are incredible. Keep doing what you're doing!
What a sweet family, and Chase is such a kind, happy boy. And Chris, you were an angel letting him play with your equipment like that. You could tell he enjoyed it!
12:12 this happiness is the most real thing I've ever seen. Couldn't keep but thinking that he would be an amazing engineer. All the happiness should come and find you dear Chase :) lot's of love from Turkey ❤
Dad here - his happiness is so contagious to so many around. He remains undefeated in coming back from adversity and Chris captured him so so well.
@@grosstr99 Your a wonderful dad
Thanks for your kind words 😊
@@grosstr99 Thank YOU for raising your beautiful son so good
That’s an average of around 3 a minute. All day, everyday. Boggles my mind living and dealing with that.
Chase you’re a legend in your own right. Keep fighting bro ❤💪
Well atleast they're pretty minor seizures now it seems. If it's only a head drop compared to a full body seizure, that's quite the progress.
But he has more severe seizures at night. 😥
Chase is such a kind caring person who loves life and who is very loved glad I got to know about him
As a teacher I’d love a student like Chase! I’m also a huge tinkerer, love cameras, and just think he’s so cool! 📸
Chris, you are SO good with being flexible and engaging with those you interview. There is grace ❤ present here.
How is that even possible? Poor kid….glad he’s happy despite that awful situation
I don't think it actually is. That would be just under 3 seizures every minute on the daily basis, assuming that he's awake 24 hours/day.
As a fellow epileptic, I could be wrong but I think it's a either minor embellishment or a typo.
As someone who is disabled I would almost say don’t pity him I’m sure he doesn’t pity himself yes it is sad but I’m sure his family doesn’t pity him because he’s living his life the best way he knows how and from the looks of it he tries not to let things stop him and his family is so supportive which is key
I think it might be a reach, but he does have multiple seizure with varying degrees...might be a few seconds, to a few minutes...and they probably just lost count.
Dont pity him. Hes clearly having an excellent quality of life
@@jamesstephenson8789very good perspective, thank you for yo
Chris, I wish my dad or step dads had been as kind, patient, and encouraging as you. Even though I was very capable (A grades etc), I was never good enough. I know now I am also autistic, which made it even harder. I wish they had just been living like you, then I wouldn't be triggered to feel so much pain when I see loving father figures.
Hugs to you, my friend. I hope you can find peace and heal. 💙🫂
The true love that emanates from Chris in person is something incredible to see. Peace and love to you too.
(Laughing) I love your name, trollsneedhugs. I identify with you. I'm not autistic, but I'm dyscalculic,... can't remember numbers, can't do algebra, also can't remember peoples' names, especially first names. Eventually I remember a name. And I've been a cashier. Stressful. Harsh criticism and (hmmm) discipline from parents was especially demoralizing.
@vintage6346 Hugs to you. No one should have to deal with toxic parents who lack the understanding to help them. This is especially true if they have a disability.
I hope you're doing okay, my friend. Dealing with such terrible parents can be VERY stressful. 😔💙🫂
@@SonicGamerGirl2006
How sweet of you to answer me. And with such kind words. Thanks for the encouragement and inclusion.
Chris, I really admire the patience and kindness in allowing him to explore your equipment. It is definitely a 'people over possessions' outlook which is so admirable.
Chris got himself a budding techno wizard! He would not stop learning and his Mom said it best. He is living a quality life, living his best life! I am so proud of the parents and also Junior Tech! 😊❤
I love how he communicated with Chris both with his tablet and his body language. When Chase swapped places to become the interviewer I laughed ..what a character! My life is better having seen this video and knowing Chase is in the world 💜
Medicinal cannibas is amazing! And I'll always be forever angry that cannibas became stigmatized due to the war on drugs etc; instead of scientists studying it for its medicinal uses. The time lost and the lives not bettered.
Chase is a joy. Bless your sweet family and your amazing, empathetic, and inquisitive son!
It's getting better. We are finding out more every year.
Man Chris is one of those once in a lifetime human beings who is just so determined to bring kindness into the world its inspiring
I couldn't imagine having to live with that many seizures hes an amazing brave guy
do you get seizures in general?
I was sweating bullets when Chase figured out how to operate the zoom lens manually 😂
Great show of patience, trust and understanding.
You’re a wonderful man 💙
Cheers from Australia 🍻🍻🍻
Dad here - you and me both mate 😂
If i lived closer id love to show chase around my workplace! Id bet hed love exploring the sewing machines, metal tumblers, branders, engravers, sandblasters, and all the tools! (While making sure he was safe of course) hopefully there are similar shops in the area that can give him tours, he would probably appeciate it more than anyone else.
Zach's story about how Chase will run up to him and cackle about whatever mischief he's gotten into is the most little brother behaviour ever. Shoutout my man
Beautiful family❤ what an amazing big brother Chase has.❤️
I truly loved everything about this video, the amount of love his family have for him is so heart warming. It was so nice to see Chris be patient and encourage Chase while he was playing with his equipment - the amount of kindness in this whole video is amazing. Chase is definitely a smart kid, it was nice to see him warm up to Chris, he has has a great future ahead of him! Great work.
Bless his heart for having so many seizures! He’s so smart and seems really happy despite all of these things
so touching and heartwarming to see how chase has such a beautiful and loving family to care for him!
Hi Chase! I’m sorry that you are going through what you’re going through. you are also a very smart and lovable individual.
His brother is amazing ! I love seeing how happy he is to have him as a brother
Just wanted to say I used to watch you 5 to 7 years ago as a young teenager. Just recently rediscovered your channel. I've never really been one to judge based on a condition, but I do believe your videos were vital to my development of being a kind and understanding person. The work you do to expose how unique and special each person is, despite any condition, is truly important and of huge social value. So thank you for your time and effort.
12:12 The way his face lit up, haha. I can't wipe the smile I got from that out of my face.
We could all learn so much from Chase! Learning to take time out and focus on some of the smaller stuff! The absolute joy in his face when he got the camera to work was so lovely to see!!❤
Dad here - I have to say that I’m amazed how often we hear this. This kid, despite an inability to fully communicate, has brought joy and a deeper perspective to many, many people. Chris did an incredible job showing how that can happen.
Hi Chase! I haven’t finished watching your video yet, but I put it on pause so I could write this and tell you how cool it was to get to meet you! I love tech and electronic equipment too, it’s awesome. But I don’t think I have the know-how to help Chris set up his stuff, so that’s pretty impressive you gave him a hand with it. 👍
We take a breath about 22,000 times a day for comparison. So once every 5 breaths... seizure.
I Loved Chase's pure curiosity about his technical interests & Chris's willingness to allow Chase to play with his equipment. Chase really has a Loving family who cares about him in every aspect.
I've written it before, Chris. There are angels on this earth and you and your lady are two of them.
I have seizures as well. Luckily they’re under control now. Can’t imagine what this little guy is going through. He’s so strong shout out to Chase.
Is it epilepsy that you have cause I also have seizures to
@@meaganmoore7094How has Annabelle9919 cause his seizure’s ?
This family is awesome. So warm, intelligent, well-spoken. I love getting to see that intimate interaction between them all, especially Chase.
Chris, your natural gifts and highly developed skills were truly on display here. Great job interacting with this family and teaching Chase!
I love the joy and wonder he has in exploring new things. Chase is certainly a special person surrounded by a great family.
I can't imagine having that many seizures. I had one once and was exhausted for *days*
How is that even possible! Omg. There's only 1440 minutes in a 24 hour period. That's seizing approximately 2.5 or 3 times per minute on average. Good lord! Praying for you all absolutely!!❤
Dad here - it’s definitely variable but we count on a two minute interval at the same times 3x a day to get an idea. Those counts get above 20 seizures in two minutes sometimes - sick or tired or just randomly bad for days on end. His body kind of folds in half if standing, time is suspended for him, and he powers through and pops out - often with a smile and excited jump. Every. Single. Time. No idea how he does it.
I absolutely LOVE your videos! You are so patient and caring when you're interacting with these kids. And you're very respectful when you're asking the parents questions about their child's diagnosis. God bless you for sharing these amazing people with the World! Sending you big hugs and much love!! 🥰
Chris, you have big Mr. Rogers energy. ❤️
Adorable family ❤❤❤ as an epileptic, I have tonic clonic and tonic Seizures... it's so much on his body I totally understand the pain... it's very draining ❤❤❤
Dad here - so sorry to hear of your journey. He has a VNS implanted as well to try to catch these and we use rescue meds for them as well. That takes it out of him for multiple days, and they often happen back to back nights too. Peace and love to you.
My ex had absent seizures a few times a day aswell as the odd tonic seizure a few times a month. That was stressful, I can't imagine what these families have to go through on a day-to-day basis yet still smile and enjoy the day with them. It's amazing. I applaud families like this!
You were so kind to him! Thanks 😊 for people like you!
Chase was so enthralled with all the equipment and seemed to have a great time with Chris! How wonderful it is that he has a natural curiosity for all things mechanical! It’s so sad that they had to move in order to get some relief from his seizures, but thank goodness the medical cannabis is working..amazing, supportive family.❤
Once again a really great video, SBSK! You guys are awesome, such a joy and learning experience to watch Chris interact so patiently and openly with Chase, and seeing Chase react positively to the effort. Should be a no-brainer to approach people with disabilities openly, but seeing is believing for many people, so thanks again for your work, Chris and company!
As always, Chris, you inspire me so much. You are patient and kind with everyone and the way you meet people where they are is wonderful. It reminds me to be more patient and to interact with people in a gentle way.
Thank you so much for your channel. I love Chase’s interest in mechanics, he’s so curious and deeply focused. Sending love to Chase and family! ❤
My mans needs some technical fidget cubes, something with switches and knobs 😂❤
Lovely family and dude, sad that his condition leaves him disoriented while he's trying to have fun, though it sure didn't stop him getting back to fiddling though 😂 I too am mechanically minded and love machines, his interest and mechanical understanding is phenomenal, top notch, and just very intuitional, I wonder if he would be a craft airplane nerd or a robotics nerd
Dad here - he LOVES them! We have had some amazing contraptions over the year that have been built by friends, family, teachers, and therapists for him to take apart and put together.
Chris your amazing as always ❤ thanks for being so considerate ❤❤❤❤
watched this channel when i was younger. Glad i found it again
The zooming in and out was so funny. Great video as always
Hello Chase! I love discovering new things too. Have fun.
That’s am amazing interview. You are SO patient with each interviewee!
Dad here - Chris is the real deal. So kind and compassionate and able to tell a story in an incredible way.
Thanks Chris for what you do, and for having your approach. I was in Special Ed for years and wish I would have had a teacher like you.
2:37 i love this so much. your dedication to creating a bond but also keeping enough boundaries while getting on each interviewee's level is a gift in itself. this whole channel is a gem.
seems chill n cool. 100% got my approval.
I truly am enjoying this episode with the way you guys are figuring things out together! I have 3 brothers (2 of them identical twins), who liked tinkering with things too!!! Yes, I can say it was even delightful❣ Thank you for doing this episode!!!
What an awesome family. Chase is so sweet and so full of happiness. It looks like he had so much fun with Chris and all of the camera equipment 🙏😁
The world needs more of you Chris!!
The whole family is great, but the brother especially is such a beautiful soul!
What a wholesome family. And always a learning experience watching Chris’s interactions with people. That’s wholesome also. ❤
The way he perfectly and quickly followed any instructions that chris gave him when assembling the camera was so interesting
Thanks for another great video Chris!
This is sad, but somehow even makes me happy.
I recently went for a job interview at a specialist school and I mentioned that I watch your videos and I think that gave me a bunch of bonus points… so thank you
Wonderful family. Thank you.❤
He's awesome. He's also got an awesome mother and brother. ❤ much love
I think Chase is just lovely and very happy.
You’re so kind and loving, and the family is so loving to
What a sweetheart. ❤ i had my first seizures 2 years ago and i have tonic clonic ones without medication or if i forget to take it. They made my memory so much worse. We love you Chase! ❤
This was actually so impressive - his mechanical curiosity - I remember being a kid mesmerized by books, which led me to sit tight and almost never move, because I had a book in my hands. Chase behaves on a different direction and it is so interesting to see his ability on camera - it is his power.
4:14 bro got that battlecry now every has 50% extra dmg
This is such a sweet video!! Chase and his family all seem to be in their element, and I absolutely feel the connection Chase has with technology and how things work. It reminds me a lot of how I used to be as a kid... although to be fair I am still like that, just more restrained. Hence why I'm studying engineering.
Chase is amazing person and his brother is just amazing with him and his mum is awesome and it amazing how he knows is electronics and fixing them and I all the best for the future for chase and he has amazing support from his family thank you for sharing his story ♥️🙏♥️♥️
Omg cameraman Chase is great!! This is such a fun and involved interview.
What I have learned in watching your videos is mostly about love. I am not a parent and I never will be, I had wonderful parents. I just see the huge amount of love in these families.
Chase and his mother and brother make a wonderful family. As usual, those who are specially-gifted cannot easily communicate with the average person who meets him for the first time. Yet special teachers like Chris and his family are communicating easily. This means that all of us can do a better job in being more patient and accepting of everyone we are interacting with. I see only support, encouraging and love in the interactions in this video. What a truly great example they are to us all of how we should live! So despite the genetic challenges Chase has been dealt in life, all of his family and he himself have turned this challenge into a blessing where they are each much better of a person in terms of kindness, love and understanding than they might have been otherwise. We should learn from them! All our love and prayers!
Chris is so kind and patient all the time
Thank You For
Your Service 🌞
Bless his mom, doing all she can for her child
Chase seems like amazing guy and he has good hobbies. I feel bad what he is going through in his life. He is a 100% human being need to be treated with respect and kindness ❤
I know it’s not a contest, but this is one of the very best interviews that I have ever seen!
Aww, Chase looks so sweet :)
He is so handsome,sweet, and extremely smart.