Living with a Smooth Brain (Lissencephaly)
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- Опубліковано 2 жов 2022
- Maddie was born with a smooth brain, unlike most brains that have ridges. This condition, known as lissencephaly, impacts every area of her life. Maddie can experience over 100 seizures a day, but she is still able to find joy by playing with her dolls and connecting with family and friends.
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It was great meeting you Chris! I hope we can get together again in the future. Maddie says hi!
Maddie is truly truly special!!! I believe every person has a purpose in this world and she is here to touch lives. What a beautiful child!!!❤
Thank you so much for sharing your story with us! I agree, she is a conduit for spreading love. And who couldn't use more love.
she’s so precious, i hope she continues to live a happy life 💕
she is beautiful. I'm no dr but when I look into her eyes I see decades of life ahead of her. She will be one of our purest souls throughout her time. My god she really is a treasure isn't she?!
She is a precious little girl; you have a beautiful family.
It's so delightful when she gasps to mean yes. It's like she's so joyfull you guessed correctly what she wanted.
I love how she does that!
I thought the same! Maybe Maddie learned the gasp from everyone else being joyful when they guessed her needs :)
@@sharkbandana yepp
There;s a european country (forget which) where a small blow means yes/agreement and it reminds me of that
I just looked it up. It is a Northern Swedish dialect where they suck in a small amount of air to say yes and you are right it sounds JUST like her cute little yes gasp! So cool!
Hearing 1 or 2 seizures on a great day. Then 150-200 on a bad day. 150-200…just unimaginable.
The bad days sound awful and I feel sad for the kid. She's smart with a loving family, and it makes me wonder if the parents have looked into treating those seizures.
@@dorkspectre Her parents have more than likely looked into treating them especially considering they see doctors quite frequently she probably has a care plan and specialist including neurologists. Seizures are usually treated with medication as suggested in the video the issue is they’re not working which happens a lot. The reason, sometimes their is more to a patients problem, they haven’t found the right medication, or it’s so new theirs no treatment for it. With neurological problems that is often the case because brains are very complex things and we don’t know everything we need to know about them. A lot of patients with no treatment often have to live with seizures and will have them frequently. They often need 24 hour care as well.
@@dorkspectre I believe her sister said something about having a magnet that they swipe across something that is supposed to try to stop the seizure. I had a friend in high school who had a surgery to cut the corpus callosum (that connects the right and left hemispheres) to try to cure her epilepsy, but it didn't work. It sounds like Maddie's parents are doing all they can for her as far as specialists go. She's a very lucky kid. She was not expected to live beyond 2 years, and here she is at six, just killin' it! I'm sure that amazing support system she has has a lot to do with that. Way to go, Maddie's fam!
@@harismohammad2005 Thanks for that information. @Donna Pirnat I forgot the part about the magnet. She's got a loving and supporting family, no doubt, and I hope they find something that works for her.
@@dorkspectre why would they not look into it?
During this interview, I get the impression that Maddie does not like to have people discussing her problems. She does comprehend, is not naïve, and as in a normal person, we do not like to be discussed, as though we are not even there.
I noticed that too, and I think the discussing of it gets her uncomfortable.
Positive talk is key❤
@@guardianangel9517 although she's limited in her vocabulary, you can tell she understands a lot of what's being said.
@@jameswest8280 if you've ever had a kid, you know the order of language development: hear, say, read, write. Inside of those first couple steps, their comprehension from hearing is far, far more developed than their ability to say what they need to. I would never assume that because someone can't communicate back, that they don't completely comprehend what's going on around them.
@@djd829 I agree, I've raised 3 kids.
Es lo mismo que digo yo. Merece el mismo respeto que tú y yo.
It's obvious that whenever they start talking about her health or conditions that she gets upset. I think she understands a lot of what people are saying. Nobody that's sick wants their family to treat them like they're sick or they need special treatment. I think that's what she was trying to express by vocalizing after those questions. It's touching
I also wonder if she picks up on the fact that they get upset talking about it so she tries to distract them off of the subject
I thought the same, it was heartbreaking
Absolutely, she is an angel😇💜🕊️💞
I have a genetic condition and that was my first thought as well.
@@lynettedeschenes6206 yes, and smart
I'm ashamed to say I've used "smooth brain" as an insult. I'm just now learning it's an actual condition and I feel horrible.
I thought it was related to slow minded animals or something like that. I know it makes no sense to post it on a UA-cam comment but I'm sorry for everytime I've said it. It was me being ignorant not me being malicious.
Wishing this family all the best ❤️
This comments reminds me of all the UA-camrs that use it as an insults too, I never found it funny and this sweet girl affirms why. Also I think you’re referring to Koalas, they have a smaller and smoother brain in comparison to their body mass.
Life's all about learning and growing. Good job!
Great job owning your mistakes. I get bothered that the R word is still used so frequently.
@@SpecialBooksbySpecialKids I only knew about the idea of a smooth brain from koalas, where they are naturally evolved that way. (A eucalyptus diet doesn’t yield a lot of calories so it’s probably an adaptation to the environment.)
When I was little, that was a normal word to describe someone intellectually challenged. I could very much tell the difference when people started using it as an insult though, and that that wasn’t a good thing to do.
it amazes me that even though her brain is formed so differently that what is "normal" she obviously understands what is said to her and can make herself understood so well. The capacity of the human spirit to thrive & survive is just amazing
i dont understand. i thought all ♀were smooth brains
@@Blox117 please, please dont actually think that
It's interesting, because when people talk about neurodivergence and autism, there's a lot of talk about functional/handicapped. But really she is thriving in her desire to live, to enjoy things, to love. I recognise a lot of myself in her, even though I'd be considered more "high function".
The way she just wants to ask what things are to find reassurance. I do that too! I'm a 24yo university graduate, but sometimes I'll just point at my cat and ask my friend "WHAT IS THAT??" because somehow having confirmation we share the same reality makes me feel safe.
She obviously faces certain challenges. But mostly, she has the right support. So she'll thrive like any kid should.
@@aldranzam3456 if you're asking other people what your own cat is, you may just have severe issues
@@Blox117 I know you're trying to be provocative, I hope you grow as a person and find ways to feel good without trying to hurt others.
It is so nice to see a family that doesn't treat their disabled child like a burden. I love all of these people.
they are in front of a camera what do you expect
The oldest is a co-parent that's not ok
She didn't ask for siblings
@@Unnecessary_Potato yeah it's sad
I have treatment resistant schizophrenia. My entire my family treats me like a burden. I didn't always used to have it but when my daughter passed away, that pushed me, an already sick, individual, over the edge. I've set up go fund me's and other people have set up go fund me's no one would ever help. I can't help the way I am.
@Multorum Unum yeah no. Parentification isnt right and there are plenty of studies that prove it causes long-term unhealthy coping mechanisms and negative behavioural patterns in adulthood. Google scholar is a thing
The way her big sister treats her and looks at her makes my heart melt into a puddle. What a beautiful family. ❤
She's lucky to have a wonderful family that adores her so much.
I know, right? That big sister is freaking amazing!
My 8yr old daughter has lissencephaly. It's so wonderful that Maddie can communicate using some words and noises.. My baby girl is basically at a 6 month old level, she used to eat only purees but unfortunately she is on a feeding tube now. It's definitely hard. As always, thank you for sharing these incredible families stories. 💕
I'm wishing you and your daughter all the best🤗
Sending much love from Salzburg
Bless you, momma 💕 I bet your daughter is beautiful!!
@@GirlMomma thank you! She absolutely is! I tell her everyday & she smiles when I say it because she knows it's true ☺️
@@Maria-qh5nc thank you very much 😊
@@zarahsgarden2097 you are so very blessed and so is she!! ❤️❤️❤️❤️
For anyone confused as to how a lack of wrinkles could cause cognitive impairment: Most of our thought processing occurs on the surface of the brain in a thin layer of cells (your gray matter). The wrinkles give your brain much more surface area, so you have a lot more room for those thought processing cells. Microcephaly (a smaller than normal brain) just compounds the problem in Maddie's case.
Loved the video; it was nice to meet Maddie and her family. It's clear that everyone around her loves her dearly and she loves them in return.
Thank you for the explaination!
@Jake Statefarm no bc the surface area would still be the same
@Jake Statefarm you cant push or pull on a brain. ima just leave it at that.
@Jake Statefarm the paper doesn't magically become bigger because you wrinkled it. It's not the wrinkles themselves but the larger area they create that matters
Thank you for explaining this.
Her family does an awesome job with her...the attention they give to every aspect of her care and to how she relates to the world shows.
I know a lot of people online with this same condition
@707josh There was a family in our town whose children(6 of them) nearly all had various issues and birth defects. Only one did not -- the eldest son, a boy of 15, who worked for my folks on our farm sometimes. The youngest had this condition. The very poor, obviously overwhelmed parents of the kids were not able to give them the kind of life the parents of the girl in this video have.
@@teslagirl1 must be something in the water
Her little gasps and clicks are so cute, what a smart little girl ❤
smarter than you
Smarter than u hahah
@@aaaaaanne sMaRtEr ThAn yOu
Maybe smart is not the right word here...
@@aaaaaanne what why ?
A close friend of my family had a son with lissencephaly. He was a lot more severely disabled than Maddie- the doctors said he would be motor-skilled and developmentally at the age of an infant for the rest of his life. He died of a seizure at 18 months. I'm glad to see that there are people living with this condition and still being able to enjoy life.
I’m so sorry for your loss
Sorry for the loss i may not have children but i know the pain of a loved one dying
🙏🙏🙏
😔😔😔
Aww, I'm sorry for your friend. Losing a little one is possibly the worst pain for many. I hope they're doing better these days.
Edit: I wanted to add that I'm also sorry for your loss. I thought it but didn't say it. It's tough losing someone who's barely even had the chance to live. :(
Anyone who frequents certain parts of the internet has heard the term "smooth brain" used in certain ways. I honestly had no idea lissencephaly existed, and it makes me remember all the other words that were originally medical terms that got used in negative/hurtful ways. It almost seems like every time we move on from one, we pick up another, even unintentionally. I guess that's pretty pessimistic though so let me add that I adore Maddie, and I'm glad she has a family who loves her and learns to do things in ways that work for her! You can see how happy and loved she is the whole time.
Right, I was about to comment this as well... when I saw those memes I didn't know this was an actual medical condition, it was just funny to me to think of a brain with no wrinkles. It is sad that we moved from the r-word to smooth brain, and that people often use medical terms of the time just to... insult others, and we imitate it without even thinking about it or questioning it. Maddie is an absolutely adorable child, and she has such a supportive family, I genuinely hope everything goes well for them.
that was my first reaction, too! this video was very informative : )
Same, I am glad they are shedding light on this condition.
Illnesses and disabilities (even more mental ones) are very often used as slurs, and it's very optimistic of you to think it's unintentional
@@PataPtichou Sim, é quase que automático e muito errado e muita gente usa sem pensar no que de fato significa.
For some reason I needed to cry. Her story grabbed my heart and SQUEEZED hard. I'll skip a family trip to McDs and give you the money instead 😁
That’s such a wonderful thing to do ❤
so thought ful
@John Broward hey man sometimes you wanna grub out
@John Broward I’ve been known to spend a large amount of cash on Taco Bell…
@John Broward 6 members of my family, including a 6-foot tall 17-yo. that would eat an entire cow if it had special sauce on it. Seattle has higher than average wages (a tax on FF also pays for our stadiums) and it shows when it comes to fast food. I don't usually get outta McDs for less than 30 bucks & if the girls want a chocolate shake...
Her big sister. She is just a beautiful girl inside and out. Her parents should be so so proud. Such a sweet caring soul.
I was thinking the same thing she is strikingly beautiful. So is Maddie and the parents i think they’re all so beautiful.
Thank you!! 🩷🩷
The only time she seems to fuss is when the discussion is about her condition. I believe that she truly DOES understand so much more than we might expect. God bless her. (God bless you, too, Chris.)
You could see how upset she got seeing her granddad crying
@Bev M-L
I know. It's like she knows and understands what they're saying she just can't verbalize her feelings. Poor kid. I bet she understands more than people thinks she does, she just can't express what she's thinking. She's a living doll.
I noticed that also it was distressing to watch. She does understand shes trapped in a mal functioning body I wonder if tech could help free her communication?
@@SnarlaRae
That's an excellent point. I mean it's worked for many other's, who are just non-verbal.I agree, that video was very distressing to watch. I cant imagine the pain and anguish her entire family feel it's evident how mich they love and care for her. A beautiful family.
@@cher280z it's a bit frustrating how you immediately turned the focus to her family, when this was actually about the kid getting distressed when her family talked about her like she wasn't there.
When you are disabled the focus is always on how the family feels and how your existence much be so hard. For them. Not how hard it is for you, as a disabled person to live with the abled.
I love how engaged her grandparents are, that’s really nice to see.
@@lolipoppification made me cry too, he is a wonderful example of a human 🥲
Her grandpa melted my heart! He loves her so much 🥰
33 yr old vet and I'm crying.
Yes! That hug she gave him said it all. He just beamed. It was truly beautiful.
My grandpa and grandma are just as loving as they are I have adhd it was worse when i was younger but they loved me with all there heart and we still hang out and watch the Sox or pats games whatever is on
her family clearly adores her and takes very good care of her. You can see how they shower her with love and take every challenge head on.
Yes and, although it's not part of the program to see the other children with the family, I think that the way the sister is shows that they get the right balance with properly caring for their other children. The sibling relationships seem healthy.
12:30 she realizes that something is wrong with grandpa, he's not playful he's not laughing with her, she notices how emotional he is in that moment, and in her own way she tries to get her grandpa attention again, she's worried! How cute ❤️
My brother had this but was more undeveloped. He died when he was only 6 years old. He was the sweetest, cutest little angel. It's been 21 years and I still miss him desperately
I’m sorry for your loss. May you keep dear memories in mind ❤
Im sorry to hear. A loss like that is hard to relate with, but I hope that despite always missing him you’ve found your peace with that loss over the years.
Thank you for sharing your memory of him
That's 6 years of life he was able to experience.
I’m so sorry 😩❤
Man those closing words from the grandfather really brought a tear to my eye. What wisdom. Much love to the family supporting Maddie; such incredible people.
Yeah the fact when he asked them about what the prognosis might be and they are like it doesn't really matter we will just take what life gives us essentially...they are truly advanced human beings.
I will never use the term "smoothbrain" as an offensive term again. She seems such an adorable little person.
I was thinking the same thing, she's too precious for this world
Chris’ ability to connect is awe inspiring to say the least. Keep moving forward!
He's a awesome guy that's for sure. We need more like him in this world.
right!! it’s like everyone he interviews can sense his pure heart right away. he’s nothing short of an angel
@@d.olluwu Thats because the people he meets can actually sense this. Young children, the elderly, special needs people and animals can pierce through every mask you might wear and look straight into your heart and soul to find out if you mean it.
I am a former music therapist and worked with a lovely young lady who had this. I think she was 17, but she always brought a smile to my day! I learned so much from her, and I'm glad that Maddie is sharing her story! Thank you Maddie for bringing joy with your smile and love of dolls!
I used to work with a little boy during Sunday morning Sunday school, who had something similar as well as non verbal autism. Working with him was the highlight of my week. He loved sitting on my lap and just cuddling during the story time.
can i ask why you stopped being a music therapist?
I’m a former music therapist too! I have learned many things from my clients as well. ☺️🥰
@@deb7412 Hey there. While I do agree it is not our business, I do not believe pinkmoonrabbit meant to sound demanding in any way (even if "may I ask" instead of "can I ask" would have been the better formulation) so your comment feels rather misplaced to me. I think the person who was asked should be the one deciding whether they wish to answer or not and we do not need to defend them preemptively.
Moreover, this channel is all about reaching out and asking questions without fear in order to really understand our fellow human beings. Please be careful when jumping to someones' defense like this. It might discourage people from being outgoing and curious and instead encourage fears of contacts. I know you mean well, it's obvious from the amount of thought you put into your comment. I'm merely trying to show you a different perspective here. :)
@@Kirmeins about the formulation thing, as a non native English speaker, I really appreciate it that you didn't judged that. It can be hard to know which words are more appropriate or how to formulate things to best say what we want to say. And to be honest, I never use "may" because I have no idea how to use it lol, even though your comment helped me understand that a little bit better
I might be wrong … but seeing this angel here … she understands much more than we prob think. I have this impression so strong
Oh she does. She gets upset and uncomfortable when they get upset or talk about her condition
@@Cimorelli102 Okay?
@@Cimorelli102 Dude her age has nothing to do with her ability to understand.
"One day it might be heartbreaking and one day it can be like this." That is one of the most beautiful quotes I have ever heard. Spoken by a man with wisdom greater than his lifetime.
Maddie’s sister is just awesome! You can tell those two have a super close bond and her older sister is very aware of her sister’s needs and the whole family has this incredibly positive outlook on life. It’s awesome! And Maddie seems sweet as can be!
Oh man, this one got me good! Maddie is so sweet, and this family has me in awe. There is clearly so much love and support, and the fact that they let Maddie lead in what she needs is so beautiful. Sending so much love and light to this whole family!
how she go live?sorry i understand very bad english!!!
I'm no doctor but I imagine the way they let her communicate in her own way and "lead", like you said, has greatly helped her brain develop through the years instead of expecting her to develop/conform to the societal norms.
Agreed, the parents are awesome!
@@naturalstatenversion3484 Couldn't agree more! I think them adapting to her has probably made a HUGE difference in Maddie's life! She feels heard and seen!
Just wanted to give a shout out to her big sister for seeming to forge such a great connection with Maddie even though I’m sure that having a sibling with a disability can sometimes make them less relatable or could make them require more attention from the parents. She’s awesome and I’m sure she will grow into a good person with a big heart.
What a sweet family. And the little girl could have searched every inch of a million lightyears away from earth and she wouldn´t be able to find a better big sister. That one is way beyond her years.
I just cried throughout this whole video. My daughter has been diagnosed with so many of these same things. I was told she wouldn't make it past her teen years but she's 27 now. She lives in a group home now because I just couldn't do everything on my own but I miss having her with me every day.
this is so sweet, thanks for sharing!
Thank you for helping to educate everyone about this condition! My daughter has Liss, microcephaly, other forms of CP, seizures and many other medical complexities. She’s had 30 surgeries, and survived so many medical issues. She’s 34 now and lives an extraordinary life! She’s been a cheerleader, soccer player, she’s ridden horses in equine therapy for over 20 years. She’s been an Easter Seals ambassador for over 20 years. Very active in her community in raising awareness and much needed funding for those that need assistance around her. She was the homecoming queen of her high school in 2009. She has overcome so many medical issues and emergencies and she does it with a smile on her face and a sense of humor! Back when she was born, in 1988, we didn’t have the internet, information and support. We had to fight for handicapped parking, accessible bathrooms and ramps at local businesses who were telling us that we could just wheel her through the back of restaurants where deliveries were made. It’s a different world now. And what a privilege and honor it’s been to watch her thrive and experience so many changes in the world of special challenges!!!
So happy to hear that your daughter experiences so many great things! Bless you and your family!
very unfortunate, to know all ♀have this
I never thought I'd ever hear of customers being wheeled through the delivery area to go eat.
I have been educated, thank you for sharing
I'm sorry she has been through so much but so happy to hear she is happy and accomplished so much. Sounds like an amazing woman. God Bless y'all.
wow, I just read that the oldest person was only 30. Cool to hear that's not the case!
When I was in kindergarten I went to a school that had a special needs child in the class. I don't know what specifically she was diagnosed with but her classroom caretaker at the time explained that she was born with a "smooth" brain that would prevent her from being like the other kids. Often as a shy kid she was the only student I would play with at recess, playing peekaboo or other games. Thank you for reminding me of the times I had connecting and playing with her. I hope she is doing well today.
I am so happy that you have Maddie in your life. My son was born with Lissencephaly and only lived three years. Unfortunately, his brain could no longer support the functions of his body. In his three years he suffered more than most. You are so blessed that you have your daughter in your life and thank you so much for not giving up.
I am so sorry for your loss. I really wish no child in this world would have to endure pain like that.
I'm sorry for your loss
I'm very sorry for your loss ❤
❤
Maddie is so fortunate to be part of such an exceptional family. Parents, siblings, grand parents all such wonderful supportive people.
Her laugh is so contagious!
This little girl is highly in-tuned to her family and the connections around her. Even down to their emotions. This proves to me the power of energy. Energy is another interpretive language and Maddie seems very much fluent in it. Expression does not necessarily mean reception. God bless Maddie. That’s a wonderful little girl.
My niece Rhianna has the same thing. She is now miraculously 23 years old. She is wheelchair bound and even though she has a feeding tube my sister feeds her regular food blended smooth because she enjoys it. She is around a 6 month level. Most people think she is the size of a 8 year old. Her life expectancy was 2 years old. She broke her own femur at 4 during a seizure.
This channel over the past two years or so has really changed my perspective on life in general. Just really opened my eyes a lot. I appreciate everything you do, Chris. Giving so many different people and their families a platform to talk about their lives. What a freaking legend.
And I wanted to wait until I was a little further into the video, but what an amazing family. All of them.
EVERYONE should watch a SBSP video EVERY day.
If you are fed up or down or feeling you’re a pretty special person or you’re thinking you’re all that or basically if you are feeling anything but a humble person who has enough, a quick watch of one of these will quickly burst your bubble!!!!
@@deb7412 oh my god. The absolute opposite!! It might be because he’s about the right age to be my son, but I think he’s the LOVELIEST!!! Lol. I’m totally in maternal love with him.
But I completely agree, it is probably the greatest channel on UA-cam- for lots of different reasons. It’s the perfect antidote to some of the nastiness you see elsewhere
@@clareshaughnessy2745 so on point!! Dittos to what you said.
Maddie and family, I NEEDED to "meet" Maddie today. I have extreme OCD and am having a tremendously hard time right now. Maddie made me smile. My smiles are rare these days
Chrissy take things a minute at a time or even slower if need be. You are doing awesome. Tell yourself "Tomorrow will be a better day." This has been my motto since I have had ME/Chronic Fatigue and Fibromyalgia. It doesn't always follow, but it does help me to think more positively!
Know that someone in the UK is thinking of you. Sending hugs your way.
Just watch the video when you need to see Maddie happy unless they talk about her condition. This little girl cannot be available for adults with difficulties. Keep in mind she has 50 percent bad days medically and those will be at unpredictable times.
I'm so sorry to hear that...hope you feel better soon...if I have one recommendation, it's Cognitive Behavioral Therapy. For me at least, a miracle cure for OCD, or about as close as you can get to one. Might be worth asking a doctor about if you're able.
Hey! I have ocd as well and i have struggled a lot too. I understand what you go through but remember that it truly does get better. Have a nice day
U will get through this i believe in you happiness is coming stay strong
Her relationship with her grandpa is absolutely adorable. ❤
Its incredible that she's still able to make up her own signals and language as a way to communicate.
My brother had lissencephaly, He died 2 years ago at the age of 3. as hard as this was to watch, It's so good to see you spreading awareness about this illness.
and it's amazing to see how happy and loved maddie is. Thank you for everything you do. I've been watching your video's for years but this one really hit home. Thank you chris.
My daughter Nala age 2 also has lissencephaly. I couldn't hold back my tears long enough while watching this video. I relate to this video and their sadness towards the diagnosis of lissencephaly our daughters share. It's a heartbreaking diagnosis for parents. Once you realize everything your little one will possibly have to go through. In Nalas case surgery, seizures, and struggling to do the most simple task that we take for granted everyday. Like grabbing or holding things walking, talking ect... Thank you for making this video to help spread awareness on such a rare diagnosis. Lissencephaly
Safe to say I won't be using "smooth brain" as an insult anymore! You learn something new every day. Lots of love to Chris and to Maddie and her family 🥰
I had no idea it was a real thing and I came here to say this.
Its insult to people like Maddie comparing these awful people to her.
its not an insult.... a brain without folds is just "not all there", wich does describe certain ppl quite well!
@@mho... You’re being very insensitive.
@@155chipmunkz how can talking about biological facts be insensitive?! ... read a book!^^
Word
I UNDERSTAND, guys! My daughter will be 40 this year. She is a wonderful human being and has been through hell. She has TSC with seizures and autism. She has lived in a group home since she was 31. She can be very sociable and will say "hi" to everyone. We call her the Wal-Mart Greeter. She has her good and bad days, too. We have battled her seizures for 40 years, adjusting doses, changing medications, etc. Recently she has been doing better. Our biggest concern now is dealing with the corporation that runs the group home. The caregivers aren't paid enough and there is quite a bit of turnover. Of course, we worry about her future and what happens when we pass on. Who will care for her and love her like we do? It does get overwhelming. We had to get in the mode of "one day at a time." Hang in there. It can be lonely. It is definitely tiring and you should be using "respite care" if you are fortunate enough to have it. My daughter loves music, being read to, dance and movement, riding in the car, being with family, watching favorite videos. She doesn't really talk. She doesn't know numbers or letters or colors though she might surprise us now and then. The little surprises make our day. We know she is very smart "in there."
Thank you for sharing your story. What would you say you have learned from your experience these past 40 years? How has it changed you as a person?
❤❤❤❤❤❤❤❤❤❤
Thank you ❤
The moms face when they were talking about the initial timeline the doctors gave them and it was heartbreaking to see them relive that moment. They have such a beautiful family and it refreshing to see them all thrive together.
like life drained out of her face, i can't imagine what remembering these moments is like
Maddie is so loveable.
The dad getting all choked up really gets to me
I had no clue that this condition actually existed outside of meme culture.
You can tell this man has a gigantic love for kids. Watching Chris interact with his guests always brings a smile to my face!
A lot of them do have real meanings. Cope, seethe, and dilate are all existing concepts that have become to be memes, for example. Don’t know what “based” came from though
We lost 2 babies with the same diagnosis. She's remarkable
I'm sorry 😞😢
Very sorry for your loss ❤
Chris is so sweet and genuine with the kids. I love this about him. He is such a great interviewer of these special kids. He doesn’t care if he comes across as silly. He shows us how amazing these kids are. ❤️
Yeah. He’s pretty amazing.
He's si genuine and he has no ego. It's so refreshing to see.
This guy is something special. I love how he connects with people and doesn't talk to them like they're not human.
I'm absolutely enchanted by all the possibilities Maddie has!! As a pediatric nurse, I knew children with lissencephaly only non-speaking, non-eating, fed by PEG-tube and, more or less, captured in a kind of permanent epileptic seizure and tortured by a cerebral palsy causing a most rigid muscular tonicity. Naturally, as pediatric palliative care-giver, we tried to ease and amend also those desolate situation of Life - and indeed we had success in very little steps. But I never heard speaking a child with lissencephaly or making purposeful communicating sounds or moves.
So this little documentation ist an astonishing eye-opener to me. Thanks so very much to the Family!
This whole family is just nothing but good vibes and love, despite her diagnosis she’s treated w such love, understanding, patience, and compassion. 💚
I am never using smooth brain as a self insult anymore 😭😭😭 bless her soul and I'm glad she has a warm and nurturing family there for her!
insults are never a good idea...Once we start understanding each other we can just move on about our day. We aren't here forever lets all make the best of it!
I feel Maddie couldn't have been born into a better, more loving family. It's so amazing how sweet and tight-knit they all are. I love them :)
Less than twenty minutes with (via internet) this beautiful soul, Maddie, and I LOVE her so much.
I actually love this family. What amazing people and wonderful souls.
Thank you all so much.
Thank you, Chris.
I stumbled across this video because I heard someone being called a "smooth brain" and googled the term and it brought me here. Not to sound corny but smooth brain sounds like a compliment after seeing your beautiful child. She's lucky to have parents and a sister like you guys, and you're lucky to have her. Beautiful family, wishing you guys the best.
She definitely knows what’s going on, because she starts whining and disrupting whenever she sees someone crying or getting upset (talking about her health issues)❤️she wants to cheer them up and get them to stop being sad 😢
Chris is so good at making conversation. Sometimes it just simple stuff but he locks his attention on his interviewees and shows them such interest and kindness.
Yeah. I don’t know what to do with kids until they get a lot older…it’s definitely not a skill everyone has.
Lovely family with an especially kind grandfather, wow.
I love these. I grew up in Special Ed and I just light up when I see happy people with disabilities. Because everyone gotta personality.
Same here
Gwenie had lissencephaly. She lived to be over 20. She had NO ablity to communicate. There are many forms of lissencephaly. I use to donate to the cause and received a christmas ornament each year with her name. She has left this place but I recall she was super well taken care of by her mom and her younger brother. He is in his early 20s now and just a caring human. TY for showing all of us another version of this super rare smooth brain lissencephaly.
I’m so touched by Maddie and Grandad’s relationship. What an amazing bond. They are so unique and strong together. What a blessed big sister! She’s got the softest place to land with her big sister.
I've seen a lot of joke about calling someone a smooth brain for being unintelligent. I used to make that joke, but I remember how awful I felt when I learned that some people are actually living that way. Never again.
Im still doing it
It’s shocking to see how many people don’t or didn’t know that people having smooth brains is real
@@mickeysweedhouse1430 Same, some people are not born with it, yet they act like it... Fascinating isn't it?
When her dad started to cry it broke my heart, then grandpa. I was in tears. I'm happy knowing how much her family loves her. The burden is great but she was sent to this family because they are willing and able to love her with everything they have. That's true love.
This guys such a diamond.
Been following for about 3 years if not longer
The world needs more people like you
I have followed your channel for years and wishing you could interview my daughter, who also has Lissencephaly. Seeing this pop up today just made my heart want to burst with joy!! Maddie is such a sweetie and reminds me SO MUCH of my girl! She plays the same “what’s that” game and adores her babies more than anything else! She is 18 years old now, and I want Maddie’s parents to know she has MANY more happy and joyful years ahead of her!! We cherish every day and get as many loves as we can. What an angel girl. Thank you for doing this interview!!! 💜💜💜💜(our daughter’s favorite color)
That's so interesting, if you want could you tell me more? This is very interesting, ofc you don't have to :)
@@josephhaslam4724 What would you like to know? 🙂
@@whitehhe I'm not sure, the condition is so interesting to me, I tend to ask things just because I am interested in what someone says haha :)
Do you have any idea why she asks "what's that?" What are some similarities and differences between your daughter and Maddie in this video? Wishing you and your family all the best. 🙂
Reach out to Chris for an interview!!! 💗 We’d love to have you!
The amount of love and kindness that radiates from everyone in this video made me cry. What incredibly wonderful people.
It always brings me such joy seeing how amazing Chris is with kids. It was beautiful to see how intently she was looking at him, I think she was interested to see a new face.
She is a gorgeous bright little girl with a family that loves and supports her. It just goes to prove that doctors don’t know everything.
Her family are giving her the best life possible and she is giving them all the love and joy that she can.
I sincerely wish that maddie continues to have wonderful happy days and that they outweigh the bad or not so good ones for both her and her whole family, they need those good days as much as she does.
Doctors do their best with the unknown. They're human too.
@@aryastark3148 I wasn’t suggesting that the Dr were at fault at all, just that they aren’t always correct with very rare disabilities or diagnosis. Nobody can know everything, that’s absurd, even people who train for years then specialise for even longer cannot know everything. That was the point I was trying to make
Of course. Doctors can only try to prepare you for what the data shows the probabilities are. And when what you're dealing with is rare or complex, then there won't be much data for them to use.
She definitely understands humor. Beautiful sweet human.
She wasn’t the only one getting a giggle out of the booping 😂 idk why but it just brought me so much joy 😂❤
Maddie hears and sees all. What a wonderful human. God bless her. She has potential in my eyes to get even better with communicating. So sweet. This family has so much love.
Wow, I'm feeling very stupid rn, I thought that such a difference in the brain would show more cognitive issues. She's communicating so good, and her family understands everything. She is so loved, gives love, and that shows on the entire family 💜
This is what we need, to look deeper, to lnow about different disabilities, and one day I'll learn more to not assume anything before I've got the whole picture.
I like the insight from people in the comments, it’s cool to see other people describe their friends and family who may have different experiences with the same illnesses. I think it’s good to learn about people in the community through this kind of connection
I didn’t even know a baby with lissencephaly could live that far past infancy. They should give her an MRI to see if her brain became more wrinkled since birth.
You’re not stupid, people with her condition have different levels of cognitive issues. Maddie appears to have it less severe but there are people who have a lot more cognitive issues due to it.
Makes me think about all the times I've seen people use "smooth brained" as an insult or joke towards someone's intellect...
@@sonokoluvr yh, plus this video shows her on a good day :)
you know? it's crazy to watch this because you can tell just how aware she is. she only gets upset when they are talking about hard things. she knows what they mean already, they mean pain and harshness. she can sense that their vibe shifts and she doesnt like it. she even tries to switch what they are talking about or distract them with other things.
(edit; just as her mother says at 13 mins ^-^)
she is so sweet, just wants people to be happy and not be in a bad vibe with sad things. babys also can tell, if you cant get a baby to laugh, it's most likely because you have too many pent up energies that have a bad feeling, make yourself light and fuzzy inside and then interact and you have a big ol smile on that babies face!!!
The part where her dad started crying had me in tears. I can't imagine staring at your baby knowing you're likely to only have a couple of years. I can't imagine a pain that compares to that... But amazing to see she's not only alive, but thriving. This is a shining example of why sometimes you just have to have hope, despite what the doctors say. So many people outlive their life expectancy by years and years. Amazing parents, amazing kids. xxx
Maddie is surrounded by so much love. She is a kind spirit.
i actually have what i think is called an incomplete lissencephaly called pachygyria, i had seizures that didnt stop by themselves when i was a kid (but not anymore) and also i have developmental delay along with autism (It made it very hard to get an autism diagnosis because they didnt know if the symptoms were caused by the pachygyria) so i think im a little bit similar to maddie in some ways.
I hope you are doing well!
I hope
damn, the ending with grandpa and maddie got me. That was solid advice from the family at the end. Cherish the nice moments and take it day by day. Also its nice to see that she gets to give and receive love by the trainload
her grandpa seems like the sweetest man ever
Seeing that dad break down talking about the docs telling him she only had 2 yrs to live was gut wrenching.....I couldn’t imagine my child having a life threatening condition. My son has just autism but he is 100 percent healthy. No seizures, no bodily issues, a healthy boy with a slight mental delay. So for that I’m so thankful. I couldn’t imagine the prospect of losing him. I’d end myself.
Her dad loves her so much I love seeing their connection
She looks so excited when she gasps for 'yes', like she's so thrilled with the surprise of you guessing what she was thinking! She's lovely and their family deserves the world.
I feel ashamed to have been using "smooth brained" as an insult. I had no clue that it's a real thing. She seems like such a sweet, bright little girl. She also seems like she's more intelligent and self aware than we may think.
Yeah me too, I also had no clue this could happen to anyone other than koalas
@@scusachannel1682It happened to both of you lmao
so just cuz ppl have smooth brains u cant say that anymore? may as well literally stop talking because EVERYTHING thats said as an insult is a real thing...
wait til you find out what pinhead means
@@jobdylan5782lobotomy? head deformation?
I luv her "PHAWS",,,she's a precious handful but I also see a precious family careing and LUVVING her.This is beautiful.❤️❤️❤️🔥
"Whatever it is, we'll deal with it" is a really, really great outlook. Life will smack you in the face more often than not, pretty much all you can ever do is roll with it ❤
As a father of a special child, i can feel the emotions of the father and grandfather, i think my life is all dedicated to my son, and i would do anything in my life to make my child grow as a strong person
This little girl is very smart and has figured out a way to communicate around her disability. She is truly amazing
Amazing parents and grandparents. The grandpa had my heart right away. Maddie is so lucky to have such a loving family around her. What a beautiful soul Maddie is and she will live a wonderful life with the support and love she gets from her family. ❤❤❤
Maddie’s trying so hard to help her grandpa when she sees that he’s upset. I hope Maddie and her family have many good days ahead.
That lil girl is beyond adorable :) ngl though from one dad to another seeing dad start to tear up hit me right in the feels, I have a son with a disability and I know how hard it hits at times. On the off chance he ever sees this... You sir are a man's man for doing what you do and staying strong for your family. Got nothing but Respect for you sir !
Maddies dad here. Thank you. 🤝
Even with her condition she is WOW. So adorable and loving and communicating as much as she can. My son only had learning disorders. The brain is amazing how it re-wires with the abilities it does have to learn. She is awesome and so are her family.
What a beautiful, loving child. Watching these always brings me to tears.
Praying for this little girl and her beautiful family; God bless them ❤.
She has such an amazing personality. What a beautiful, sweet girl. ❤️
The way she has created her own form of communication is remarkable. It’s so interesting and delightful to see her communication skills with her family. Much love ❤
I'm grateful to live in a place and time where people living with disabilities can be loved and cherished for who they are. Historically the world hasn't been kind toward them. Maddie's a wonderful child with a beautiful, loving, supportive family, and our world is made better by having them ❤️
Oh my gosh her older sister is sooooo sweet to her
I've only just found this channel. At first, I found it rather uncomfortable, but to watch how you adapt to each individual person, and the interactions with these kids is absolutely heart warming. Thank you so much for doing what you do