Living with a Smooth Brain (Lissencephaly)

[@alex.in.the.wilderness8725]

It was great meeting you Chris! I hope we can get together again in the future. Maddie says hi!

[@ChickenFerLei]

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!!!❤

[@madeincda]

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.

[@neetwithajob]

she’s so precious, i hope she continues to live a happy life 💕

[@sarahmelody9366]

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?!

[@Joemnc]

She is a precious little girl; you have a beautiful family.

[@DandyinDistress]

It's so delightful when she gasps to mean yes. It's like she's so joyfull you guessed correctly what she wanted.

[@TheMollyBea]

I love how she does that!

[@sharkbandana]

I thought the same! Maybe Maddie learned the gasp from everyone else being joyful when they guessed her needs :)

[@Looking.for.adventures]

@@sharkbandana yepp

[@cornstarch4575]

There;s a european country (forget which) where a small blow means yes/agreement and it reminds me of that

[@chelseataylor5244]

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!

[@zarahsgarden2097]

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. 💕

[@Maria-qh5nc]

I'm wishing you and your daughter all the best🤗 Sending much love from Salzburg

[@GirlMomma]

Bless you, momma 💕 I bet your daughter is beautiful!!

[@zarahsgarden2097]

@@GirlMomma thank you! She absolutely is! I tell her everyday & she smiles when I say it because she knows it's true ☺️

[@zarahsgarden2097]

@@Maria-qh5nc thank you very much 😊

[@GirlMomma]

@@zarahsgarden2097 you are so very blessed and so is she!! ❤️❤️❤️❤️

[@moniquehamilton5195]

Maddie is surrounded by so much love. She is a kind spirit.

[@matthewcrome5835]

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.

[@thomasvangompel7211]

I’m so sorry for your loss

[@-MarbleHornetsFan-]

Sorry for the loss i may not have children but i know the pain of a loved one dying

[@visionvixxen]

🙏🙏🙏

[@roselline]

😔😔😔

[@ElysetheEevee]

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. :(

[@underserf]

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 😁

[@SamB..1995]

That’s such a wonderful thing to do ❤

[@caracalboy6000]

so thought ful

[@Userhandleidk]

@John Broward hey man sometimes you wanna grub out

[@Userhandleidk]

@John Broward I’ve been known to spend a large amount of cash on Taco Bell…

[@underserf]

@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...

[@Biotoze]

Hearing 1 or 2 seizures on a great day. Then 150-200 on a bad day. 150-200…just unimaginable.

[@dorkspectre]

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.

[@harismohammad2005]

@@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.

[@donnapirnat5313]

@@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!

[@dorkspectre]

@@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.

[@river9215]

@@dorkspectre why would they not look into it?

[@Rexrif]

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

[@MilouAT]

I’m sorry for your loss. May you keep dear memories in mind ❤

[@Hanjhob]

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.

[@mrahzzz]

Thank you for sharing your memory of him

[@jameswest8280]

That's 6 years of life he was able to experience.

[@Art.and.Hamsters]

I’m so sorry 😩❤

[@twistedcryptid]

I love how engaged her grandparents are, that’s really nice to see.

[@justacutepieceofshit]

@@lolipoppification made me cry too, he is a wonderful example of a human 🥲

[@psychoshrink166]

Her grandpa melted my heart! He loves her so much 🥰

[@zacharywalker5344]

33 yr old vet and I'm crying.

[@pennyp7382]

Yes! That hug she gave him said it all. He just beamed. It was truly beautiful.

[@nickbuckley4371]

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

[@braveasanoun5732]

It is so nice to see a family that doesn't treat their disabled child like a burden. I love all of these people.

[@aaaaaanne]

they are in front of a camera what do you expect

[@Agender_Potato]

The oldest is a co-parent that's not ok She didn't ask for siblings

[@rajeshsogun2953]

@@Agender_Potato yeah it's sad

[@scottcupp8129]

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.

[@Mia-fg2ik]

@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

[@BeverlyM52]

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.)

[@armymydaycaratnctzenatinyaroha]

You could see how upset she got seeing her granddad crying

[@cher280z]

@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.

[@SnarlaRae]

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?

[@cher280z]

@@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.

[@doggytheanarchist7876]

@@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.

[@jasonpatterson8091]

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.

[@ganchos2849]

Thank you for the explaination!

[@hellfire_.]

@Jake Statefarm no bc the surface area would still be the same

[@zukoHD]

@Jake Statefarm you cant push or pull on a brain. ima just leave it at that.

[@lolbajset]

@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

[@dancingfirefly7761]

Thank you for explaining this.

[@teslagirl1]

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.

[@707josh]

I know a lot of people online with this same condition

[@teslagirl1]

@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.

[@707josh]

@@teslagirl1 must be something in the water

[@Baysidemom2]

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

[@Blox117]

i dont understand. i thought all ♀were smooth brains

[@adityaramadhan1708]

@@Blox117 please, please dont actually think that

[@aldranzam3456]

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.

[@Blox117]

@@aldranzam3456 if you're asking other people what your own cat is, you may just have severe issues

[@aldranzam3456]

@@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.

[@TwistnMotley]

Chris’ ability to connect is awe inspiring to say the least. Keep moving forward!

[@toast4975]

He's a awesome guy that's for sure. We need more like him in this world.

[@d.olluwu]

right!! it’s like everyone he interviews can sense his pure heart right away. he’s nothing short of an angel

[@Schwertfisch13]

@@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.

[@ellaelliott4415]

He’s genuinely so compassionate and respectful and wants to get to know who’s he interviewing not just in that setting but as people. People feel safe around him and open up. Admittedly I laughed at the “boop” too because her laugh is so sweet

[@eeen4119]

Im horrible with kids and dont like to be around them lol. He’s an angel, I could never

[@jeanroeder5534]

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.

[@guardianangel9517]

I noticed that too, and I think the discussing of it gets her uncomfortable. Positive talk is key❤

[@jameswest8280]

@@guardianangel9517 although she's limited in her vocabulary, you can tell she understands a lot of what's being said.

[@djd829]

@@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.

[@jameswest8280]

@@djd829 I agree, I've raised 3 kids.

[@maria-qr3pt]

Es lo mismo que digo yo. Merece el mismo respeto que tú y yo.

[@marymewskers2477]

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!

[@julievanderleest]

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.

[@fr33f4l4st1ne]

can i ask why you stopped being a music therapist?

[@sopranomegs]

I’m a former music therapist too! I have learned many things from my clients as well. ☺️🥰

[@Kirmeins]

@@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. :)

[@lounirs]

@@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

[@designersheets]

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.

[@luchirimoya]

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.

[@l6214]

that was my first reaction, too! this video was very informative : )

[@95Jul8]

Same, I am glad they are shedding light on this condition.

[@PataPtichou]

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

[@fabianifigueira]

@@PataPtichou Sim, é quase que automático e muito errado e muita gente usa sem pensar no que de fato significa.

[@stephangraham8578]

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.

[@miajc6606]

I am so sorry for your loss. I really wish no child in this world would have to endure pain like that.

[@scarletweb2106]

I'm sorry for your loss

[@eveking6289]

I'm very sorry for your loss ❤

[@windasafriend]

❤

[@Daniele-hh6gt]

I'm sorry for your loss.

[@brianatysonofficial]

The way her big sister treats her and looks at her makes my heart melt into a puddle. What a beautiful family. ❤

[@SignOfTheTimes008]

She's lucky to have a wonderful family that adores her so much.

[@darkaquatus]

I know, right? That big sister is freaking amazing!

[@4thorder]

No kidding! I was thinking the same thing. I have 5 kids. Three of which are adopted. The youngest two have special needs and are sisters. The older one pays very close attention to the younger one and has for years. She doesn't have to, she wants to. The older one has autism and the younger one has a list of issues; ACC, bipolar, autism, epilepsy etc... She is literally missing part of her brain. But sh can actually almost function normally. I truly believe that it has a lot to do with her sister. :) They are now 25 and 21 and are doing very well!

[@carmengogeidnas9670]

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

[@luxtobeyou]

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

[@_observado]

I thought the same, it was heartbreaking

[@lynettedeschenes6206]

Absolutely, she is an angel😇💜🕊️💞

[@jamielee7404]

I have a genetic condition and that was my first thought as well.

[@北京小姐姐在硅谷]

@@lynettedeschenes6206 yes, and smart

[@Serotonin_wonderland]

Her little gasps and clicks are so cute, what a smart little girl ❤

[@aaaaaanne]

smarter than you

[@meme_machineshorts7740]

Smarter than u hahah

[@Serotonin_wonderland]

@@aaaaaanne sMaRtEr ThAn yOu

[@MSuyay]

Maybe smart is not the right word here...

[@itsllaboutme]

@@aaaaaanne what why ?

[@jenniferleyden6557]

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!

[@sucateirodoferrari]

how she go live?sorry i understand very bad english!!!

[@naturalstatenversion3484]

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!

[@jenniferleyden6557]

@@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!

[@matthewgriffin3486]

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.

[@geometricart7851]

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.

[@kerrie9404]

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!

[@michelleanderson1745]

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!!!

[@Katharina14031982]

So happy to hear that your daughter experiences so many great things! Bless you and your family!

[@Blox117]

very unfortunate, to know all ♀have this

[@HarmoniaGrace]

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

[@shaylacrossland1475]

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.

[@SubuRabbit]

wow, I just read that the oldest person was only 30. Cool to hear that's not the case!

[@kaitlynwoods11ify]

"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.

[@kjmclarke]

Her big sister. She is just a beautiful girl inside and out. Her parents should be so so proud. Such a sweet caring soul.

[@grape_ringpop]

I was thinking the same thing she is strikingly beautiful. So is Maddie and the parents i think they’re all so beautiful.

[@Hp_Edits16]

Thank you!! 🩷🩷

[@CardboardIsweird]

@@grape_ringpop she’s underaged broooooo

[@protercool8474]

@@CardboardIsweird A child can be beautiful, its fine to say that so long as you don't think its hot when they are

[@Lanhua.v]

@@CardboardIsweirdhow is it that your brain defaults to this conclusion??? Go outside.

[@Roosader]

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.

[@Roosader]

And I wanted to wait until I was a little further into the video, but what an amazing family. All of them.

[@clareshaughnessy2745]

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!!!!

[@clareshaughnessy2745]

@@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 KZbin- for lots of different reasons. It’s the perfect antidote to some of the nastiness you see elsewhere

[@jrahn66]

@@clareshaughnessy2745 so on point!! Dittos to what you said.

[@diochu2163]

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.

[@lornocford6482]

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.

[@ceekayy79]

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.

[@zina2435]

this is so sweet, thanks for sharing!

[@allthumbs3792]

Maddie is so fortunate to be part of such an exceptional family. Parents, siblings, grand parents all such wonderful supportive people.

[@smokybaret5862]

My sister had microlissencephaly. But she couldn't sit, talk or eat. She died almost 5 years ago, 2 months before she would've turned 10. We shared the same birthday, 18 years apart! It made me happy and sad at the same time watching this video. I'm very happy for Maddie that she has such a loving family and can be part of their life. I hope she is still good today. Much love for everyone!❤

[@aliciax777]

Her laugh is so contagious!

[@acefoxx597]

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.

[@genesiskravitz8621]

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.

[@aliyamoon80]

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. ❤️

[@robyt9542]

Yeah. He’s pretty amazing.

[@LilySaintSin]

He's si genuine and he has no ego. It's so refreshing to see.

[@patriciawilliams6009]

This guy is something special. I love how he connects with people and doesn't talk to them like they're not human.

[@Becsx]

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 ❤️

[@ellaelliott4415]

She’s very intuitive

[@whitehhe]

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)

[@josephhaslam4724]

That's so interesting, if you want could you tell me more? This is very interesting, ofc you don't have to :)

[@whitehhe]

@@josephhaslam4724 What would you like to know? 🙂

[@josephhaslam4724]

@@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 :)

[@fozziebean]

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. 🙂

[@katiesanders96]

Reach out to Chris for an interview!!! 💗 We’d love to have you!

[@luckyowl6432]

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 KZbin 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 ❤️

[@Himmel-Himmel]

This comments reminds me of all the KZbinrs 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.

[@SpecialBooksbySpecialKids]

Life's all about learning and growing. Good job!

[@sugarsore]

Great job owning your mistakes. I get bothered that the R word is still used so frequently.

[@nerysghemor5781]

@@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.)

[@nerysghemor5781]

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.

[@Koyekh]

The amount of love and kindness that radiates from everyone in this video made me cry. What incredibly wonderful people.

[@elizabethhamilton1166]

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.

[@nerysghemor5781]

Yeah. I don’t know what to do with kids until they get a lot older…it’s definitely not a skill everyone has.

[@Dark1ncision]

This guys such a diamond. Been following for about 3 years if not longer The world needs more people like you

[@ScotsyCajn]

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.

[@CaitlynHug]

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.

[@kouhai2456]

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 :)

[@Code325]

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.

[@victoriaa1427]

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.

[@Aracscork]

like life drained out of her face, i can't imagine what remembering these moments is like

[@heidibower2538]

Maddie is so loveable.

[@frankslefttesticle3247]

The dad getting all choked up really gets to me

[@chrissycopeland8064]

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

[@ginahaydon8240]

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.

[@mysticbengals521]

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.

[@Tutorial7a]

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.

[@n1a549]

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

[@nickbuckley4371]

U will get through this i believe in you happiness is coming stay strong

[@niki8005]

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.

[@wheelie26]

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.

[@aryastark3148]

Doctors do their best with the unknown. They're human too.

[@wheelie26]

@@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

[@katiekawaii]

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.

[@captainngoose]

Its incredible that she's still able to make up her own signals and language as a way to communicate.

[@nicolenotizieeamici]

I might be wrong … but seeing this angel here … she understands much more than we prob think. I have this impression so strong

[@amyanderson4303]

Oh she does. She gets upset and uncomfortable when they get upset or talk about her condition

[@amyanderson4303]

@@Cimorelli102 Okay?

[@amyanderson4303]

@@Cimorelli102 Dude her age has nothing to do with her ability to understand.

[@sgarcia5546]

I really look forward to new videos from you guys! I deal with a few chronic health issues myself including a few mental illnesses that make me feel very different from the rest of the world, and honestly the amazing beautiful people featured on this channel make me feel like I'm not going through my struggles alone. Although my issue are different, and perhaps not as severe at times. But I'm not alone. Thank you so much

[@lisashawe]

Me, too

[@blockofdirt6051]

Maddie is such an angel. I couldn't get the smile off my face entire video. Every good parent wants his kids to just be happy. Maddie's family is sooo good. (Sorry, English is not my native language) best wishes, from Ukraine.

[@Fragrantbeard]

Sending love to Ukraine!

[@thelegendfortune]

Stay safe out there

[@erinaa9486]

💙💛💙💛

[@apollosperineum]

best wishes back to you. let your compassionate soul stay safe dear

[@jasminecarrington6471]

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

[@stickinug]

Gosh this family is so freaking cute 😭 There is so much love here, it is palpable! Definitely one of my favorite videos on this channel. Thanks for sharing your story with us, Maddie!

[@Suarecks]

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 ❤

[@tatianaflores1926]

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.

[@shaani7978]

Chris is such a light in this world. I have been following this channel for a while now, and I just appreciate the work that you do. Maddie is such a sweetheart!

[@emilymueller94]

Her laughs and giggles are contagious. What a precious, beautiful, special little girl. ❤

[@chameleon28]

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.

[@ungenbunyon5548]

She's such a sweet angel, a true survivor and a blessing to our world, I think it says a lot about her as a person that she shares her baby dolls, most kids her age don't like sharing, but she loves sharing her joy with others

[@lolly5453]

What a joy to watch Maddies interview - she is such a happy sweet little girl, and it’s not hard to see why, considering she is surrounded by so much love! Seeing the relationships Maddie has with her family members is absolutely adorable 😍 Maddie has one of those personalities that just attracts light and love, like a little magnet for all the good things in life! I’m sure that magnetism for friendship, fun and love will only continue to grow! 🥰💞🧲☀️🌈

[@ellaelliott4415]

Maddie! It was so wonderful to get to know you and your family. You’re so insightful and intuitive. The way you communicate is so cool. You’re so cool! To Maddie’s family: I can’t imagine a better family to be around. Your acceptance of Maddie is something not everyone would do, sadly. So thank you for taking time, just like all family should

[@mackofalltrades3155]

She definitely understands humor. Beautiful sweet human.

[@darklordojeda]

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.

[@japooskas]

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

[@lisalaw715]

What a great sister Maddie has! She is empathetic and a beautiful young woman just as Maddie is a beautiful little girl.

[@EfikZara]

What a beautiful, loving child. Watching these always brings me to tears. Praying for this little girl and her beautiful family; God bless them ❤.

[@toast4975]

What a sweetie. My favorite thing about this channel is seeing all the lovely people you talk to and learning about different disabilities. Sorry if that didn't sound correct. Love what you do!!

[@akashaquetzal4576]

It sounded perfect what you wrote. Thank you for sharing your thoughts.

[@abdullahak2204]

Maddie is such a playful girl! Her laughter is wholesome! Chris you engage with every person you interview in their own way! When the dad got emotional I really felt that...it definitely would not be easy for the parents.... The parents and grandparents are amazing people! When the dad said all he wants is for Maddie to be happy was so precious! 💚

[@Briann_uhhh]

This whole family is just nothing but good vibes and love, despite her diagnosis she’s treated w such love, understanding, patience, and compassion. 💚

[@tmofedm1]

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 ❤️

[@Ullisen]

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.

[@starsonapollo2]

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

[@nuclearcatbaby1131]

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.

[@sonokoluvr]

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.

[@pillsburydoughboy1627]

Makes me think about all the times I've seen people use "smooth brained" as an insult or joke towards someone's intellect...

[@ScaryGeorgia26]

@@sonokoluvr yh, plus this video shows her on a good day :)

[@janessap1739]

My cheeks hurt by the time I was done watching this video because I didn’t realize I had been smiling the entire time…Smiling so huge cuz this precious little girl has been thru so much , yet has found her way to navigate life in her family & be understood. Not only communicate, but to do it effectively & so adorably… and the love that her family has for her is so extraordinary, genuine ❤ I can watch Madi’s little gasps and smiles and the way she says Hi! & her pretend play with her babies, etc for hours… I hope there’s a follow up video soon… Madi has been probably my favorite special kid yet !! 💯🙏🏻💕

[@manhathaway]

I was crying the most way through this because everyone deserves a chance to live, every time. Chris you are a real hero. And to the parents of Maddi, you are the most wonderful people with a beautiful story of hope and endurance. Maddi, you did great in this interview; you're a star! I can appreciate all the things I haven't been able to see through your eyes. Thank all of you, truly.

[@tjunkie7850]

Fantastic episode! As a SPED educator for nearly 20 years and a father of a child who has a physical disability I can not tell you how much your channel continues to impact me. Both personally and professionally! Thanks and keep up the great work!

[@lucicorinne297]

What a beautifully empathetic and deeply caring family. Maddie is just so blessed to be around such support and love, and they are blessed with her sweet spirit. The grandfather and father deeply moved me emotionally with their display of care and love for their entire family. May only the best continue to come to Maddie and her family.

[@rhondahewitt8196]

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.

[@steffi1833]

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 😢

[@JoJo-ve3fl]

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. ❤❤❤

[@TheNYBully]

May God bless Maddie’s entire family. They are awesome people that show her unconditional love. I pray that someone contacts them with unlimited help, and answers. Prayers and positive thoughts 🙏🏾

[@johnblake3863]

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."

[@radishpineapple74]

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?

[@ketamineis4horses]

❤❤❤❤❤❤❤❤❤❤

[@scarletweb2106]

Thank you ❤

[@Flamsterette]

Paragraphs are a good idea here. Saying hi to everyone is annoying.

[@lilwaffleiron7845]

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 🥰

[@thenomadrhodes]

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.

[@mho...]

its not an insult.... a brain without folds is just "not all there", wich does describe certain ppl quite well!

[@155chipmunkz]

@@mho... You’re being very insensitive.

[@mho...]

@@155chipmunkz how can talking about biological facts be insensitive?! ... read a book!^^

[@firstofthemonthclub4491]

Word

[@alyssastevenson9879]

It's beautiful to see her sister's love for Maddie and how much the family supports and cares for her on such a deeper level.

[@mrsSeasunshine]

That sweet little girl is surrounded by so much love ! The relationship she has with her big sis and her grand father made me tear up. Thanks to the parents for the wise words…day by day. 💜

[@majkolsson7192]

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.

[@k8eekatt]

Chris, you are an amazingly empathic communicator. Thanks for sharing Maddie and her family with us.

[@BunnyQueen97]

"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 ❤

[@annemariesmith799]

Chris, what you are doing is so important. The awareness that you are creating in such a respectful and loving way is to be commended. These families are absolutely inspiring and precious.

[@mamaof3beasties440]

My great nephew had lissencephaly and epilepsy. He was amazing and had a more severe form than Maddie does. He wasn't able to walk, feed himself, or anything like that. He did learn to let us know when he was hungry, thirsty, happy, sad, and angry. He sadly passed away from a grand mal seizure when he was 7 yrs old. He was an absolute angel and we miss him every single day. It makes me happy to see Maddie doing so well and having a good day the day you went to see her. Sending her family love, hugs, and prayers.

[@eveking6289]

I'm very sorry for your loss ❤

[@TalkingTomx3]

I am in tears. I'm so thankful this channel got their comments back. This channel has impacted my life for the absolute better and beneficial satisfactory of accepting others and learning about them and seeing not all men are actually awful and involved father's. Beautiful.

[@shoelacedonkey]

I will never use the term "smoothbrain" as an offensive term again. She seems such an adorable little person.

[@amelioravictoriadionyssia3323]

I was thinking the same thing, she's too precious for this world

[@Odihmantich]

never again? how will you offend people then? Do you have a lot of those terms in your arsenal?

[@dominiquepilon5910]

love her laughing

[@ijustrealllylikecats]

​​@@OdihmantichIt's something people do say, and they probably don't realize that it's an actual condition. The important thing is that they have learned now! 😊

[@ijustrealllylikecats]

​@@OdihmantichAlso I'm sure they have plenty of other things in their arsenal, like anyone else. So don't worry, they will still be able to offend someone if they need to 😊

[@Derlei]

You're a good man Chris. Knowing there are people like you all over the world gives me faith in humanity when many times I had started to lose faith in humanity. You give a voice to to the most vulnerable in society and that's warms my heart

[@julievanderleest]

Chris I just love how wonderful you are with the kids and the family you interview with. You include the young siblings and really let each of them tell their story and how they are affected by the disability of their child or sibling.

[@LoriAnn1977]

She is an adorable little lady. She has a beautiful soul, it shows in her eyes. It seems she couldn’t have a better, more understanding and caring family. Love and light to all of you.

[@Chibblechabble]

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.

[@kelsiecaswell9845]

She reminds me so much of my son. I could tell she didn't like her dad talking about her diagnosis and her brain and how it developed differently when she started to complain... I love how she communicates, and I love how everyone accepts the way she chooses to communicate!!