Living with an Unknown Genetic Syndrome (The Only Discovered Case)
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- čas přidán 5. 09. 2024
- Evely lives with an unknown genetic condition. At four years old she is unable to walk or talk. The future is uncertain, but Evely’s big sister promises to protect her no matter what happens.
Follow Evely at / thediazgirls
Evely's diagnoses include Bilateral anophthalia, congenital heart disease, microcephaly, hypotonia, abnormal brain waves, obstructive sleep apnea, Gastroesophageal reflux disease
Support SBSK at / sbsk
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/ specialbooksbyspecialkids
/ chrisulmer
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The mom is such a beautiful woman not just her physical appearance but her heart shines through..such a true Gem of a human
So agree!
@You're Brainwashed Maybe it's because you're brainwashed
I think the same thing about the older daughter. A good and pure heart.
As a mother of special needs daughter myself, I can tell you that what you see in this little angel's mom is that she has learned the true meaning of unconditional love. :) She is a beautiful soul and God has truly blessed that family. It's not easy and she's stressed, worried and on edge... all the time, like she said but I get it. Its a worry that will never end. You only ever want the best for your babies....
Girl bye. These are the same women who demonize black men for dating white women but jump on the first white guy that will deal with them just to have babies with so called "good hair".
I think Evely would really enjoy musical therapy. The way she gets so excited with even the slightest sound of something musical is so wholesome ^^
an amazing beautiful family and credit to the mum
I'm studying right now to become a music therapist, and this is exactly what I was thinking! This video really confirms and strengthens my direction and passion -- it is so beautiful to see the connection between Evely and Chris!
Agreed ,saw her being happy and excited whenever there would be high sound she would go high and low like how her mom claps it’s fast like how high is super fast
Absolutely! I'm so glad you offered that suggestion. I was thinking the same thing but didn't say it. I've seen a similar case and this child loved the repetition of the letter "B" & words that began with that letter. We would say Baseball or Daddy's a dim Bulb! She would laugh & laugh!
I have an little sis who does do music therapy sometimes and she really likes Fireflies By Owl City
2:52 I love how her older sister immediately knew what was wrong🥺
what an amazing sister omg ❤️
I know!
That part actually got me dying
She is so smart and sweet
That mom really knows how to dress her kids, they're absolutely adorable!
And the bows!! I am in love with those bows!!
Right💪🏾❤️
Absolutely
Yh
She’s a really good mom too
When the older sister says, " I like her like this" I believe she means," I just love her as she is for who she is."❤️
She loves her just the way that the creator created her!
she is a child so her wording won’t be 100%
Absolutely. She doesn't know her sister any other way. It would be different if the younger sister had been in an accident or something
What else would she mean by that i'm curious?
@@isaywhatiwant8612 I guess it could be taken to mean "I'm glad that she's disabled because I don't like her" But of course that isn't the case.
The older sister understands so much.. you can tell the amount of sympathy she has towards what her sister goes through in her condition. They all 3 are angels on earth ❤️
As I’m at the end of the video now, tears are streaming as they always do when I watch this channel. Bless everyone’s heart that is involved in spreading awareness for those that wouldn’t normally have a platform.
I love that you played music for her, and watching her feel and react to the music & vibrations. Beautiful video 😭
That big sister is literally one in a species for pure goodness. It takes a *very* special mommy to nurture such a beautiful soul. No wonder Evely is so happy.
💯❤️
"They can play with her....gently" It's the fact that this little girl can set BOUNDARIES without hesitation and I'm 30 years old & just NOW getting comfortable with saying the word "No" and meaning it...for me. Their mom's doing an excellent job! ❤
Aww I hope it goes well for you! I’m 18 and am also learning now to say no, there’s a lot of bad people out there but theres always hope, Im happy for you!
le thanks! And best wishes to you too! I'm glad you're starting early, your 30 year old self will be so thankful💐
Hahaha amen!
@@KingDuckSauce I learned it at 48. But I'm happy I did.
Yes! Can we get some HUGE love and respect for mom. ❤️
The way she touched the guitar and was waving like Chris’s hand movements was kind of epic to be honest. It’s like she feels vibrations and frequencies more then us. And that’s a super power ❤
Yeah, noticed that 😊
I came to comments to mention the same thing. It was kind of undeniable.
SHE EVEN HAD HER UPPER BODY AT THE GITAR - YOU KNOW, THE STOMACH, WHERE YOU FEEL IT THE MOST, PLUS BOTH ARMS , NOT SHAKING, PERFECTLY STRETCHED.
"Is there anything special about your sister?"
"Yes."
"What is it?"
"She hugs me a lot when she gets excited."
The sweetest moment 🥰
That had me in tears
So precious!!!
I love it
Made me squeal 😂 that was so wholesome.
I get frightened hearing her mother hasn’t slept. This baby needs her momma around as long as possible. She deserves rest ♥️
Only a good mother get anxiety.. this is the first case.. only case.. who can she relate too? She wonders who will take care and love her child if she wasn't there.. she is a protective mother.. she will always be around ,.. strong for her kids.. after all,.. this mother and sister is highly blessed
@@iemmekeepingitreal7255 I'm so confused why tf ur not mentioning her dad? Her dad is her parent too. Stop putting all the pressure the woman give her a break goddammit
“Is there anything special about your sister?”
“Yes”
“What is it?”
“She hugs me a lot when she gets excited”
My heart
The older sister is one very smart kid. I feel like she'll be a doctor or someone helping others someday.
she’s a lil doc mc stuffins
She's an awesome big sis ❤
Whatever else she does, I hope she will grow up to also prioritize self care and her own value, worth and importance.
Her sister is like she was sent on purpose. The musical connection is fascinating.
Beautiful spirit
Ye its cool especially the click clack noise also crazy how calm she is with her sib.
She loves music and dance creative lil soul right there
Probably bc it’s a sensory thing. Seems like she has SPD looking at her behavior and things said in this video. It goes both ways; sensory stimuli can cause positive or negative reactions. The music must be a great stimulus for her, while a negative stimulus for her is wearing shoes. That specific touch/pressure probably makes her feel very uncomfortable. The music might relief her positively from sensory overload
Yes! God blessed her and her family soo much!
Старшая сестрёнка, такая заботливая)))
Her kids are so intelligent, articulate, and empathetic. I’m really impressed by the older sister. Your typical siblings aren’t so sweet (anecdotal) and that kid is going places!!!
The big sister is such a beautiful little soul! She’s so respectful, loving, caring, and gentle with her sister! She values who her sister is and seems to be protective! Mom you are amazing! God bless this beautiful family
he didnt...in fact he CURSED THEM....got any MORE bronze age cultist myths to spread around or are you done?
It's sweet how the interviewer knew exactly what to do and followed what Evely wanted. It's heartwarming at how kind humanity can be
Yes!
there are too much of evil surrounding our environment that we tend to not notice actual 'good' people around. Man, he's definitely one of a kind.
Funny, as a deaf person when Chris started playing the guitar, I instinctually put my hand on my laptop's speaker. Evely's connection to music is clear as day and I really hope she is surrounded by it as much as she can be.
did u expect to feel a vibration.. 💀
@@milan0404 I have an extension that increases my volume, so yes.
@@milan0404 if you put sound too loud on phone the speaker vibrates so I think he or she did xD
he played blister in the sun by violent femmes
@@milan0404 it does vibrate
what a sweet family. The mom's eyes are so expressional and kind like a real-life Disney princess.
They're a whole beautiful family, inside and out! It's beyond heartwarming
Would you talk like that if she was white?
@@Boxofcare666 who hurt you
@@arsemaalem4826 don't feed the troll (and if it is a serious reply, this person need some help)
@@danielle_tal true but so hard to not answer this piece of *
This is for her momma:
You are doing amazing, you are raising those girls beautifully, and you are such an inspiration. You are enough, strong enough, and a wonderful wonderful mother.
Amen . I agree beautiful soul
What a great love they have for sister and child. All are beautiful. GOD is holding them In his hands.
the way she kept her hand on the guitar to feel more than just what she was hearing it warmed my heart, she's so special and adorable. truly an angel
it's like she constantly needs to be stimulated, and stims non stop, especially her little toy she uses where she rubs her teeth, and the way she moves her hands when shes enjoying her music, it reminds me a lot of autistic/neurodivergent traits! shes so adorable. i have a feeling she might be experiencing ASMR because of certain reactions to certain sounds... her momma and big sister are so sweet and gentle, she couldnt have fallen into the hands of greater people. her mom has a good taste of fashion too! hope she can find the answers or peace within herself she needs to finally get some well deserved rest, if she hasnt already since this came out in 2019
i agree!! i wonder if the use of asmr could aid in her cognitive development in a way
Very cool!! You’re so right. Constantly needs sensory input, especially with sounds. And she def is stimming. And I think you’re right on with the ASMR, the true definition; I noticed the pure bliss reaction too.
I’m autistic and was thinking the same thing! When I get reallly excited about something I will do stims that are similar to what she is doing :)
Autism is just one type of many in neurodivergence, you don't need to add the neurodivergence slash because its not really like any other neurodivergent types (ADHD and dyslexia being just two other types). Just say it reminds you of autism to be less ambiguous.
@@rachel4539 they might typically share symptoms though, simming for example which is mainly what i mentioned, hense why i said both because it doesnt have to be autism specifically, im not in a position to be diagnosing anybody, so id rather be vague
I like how the "special" or "different" characteristics her sister points out are all harmless, arbitrary things she just seems to love or notice about her, not things others perceive as "wrong". The mother is raising very intelligent empathetic children, and seemingly by example.
The mother smiles a lot, and she's so beautiful. Such positivity. She looks so young. I wish all three of them the best
Intelligent child! I love how she connects with guitar by touching it. She recognize there is a source and connects with it.
What a deep statement for us all. There is a source, connect with it.
Omg she is so beautiful but it’s the big sister for me the way she loves and cares for her sister Truly gift from God
Amen
True
True
Both are beautiful
@@Lyrics_queen111 of course they are! Who said otherwise?????
I hope this child gets a diagnosis soon. The mother and sister need some time alone and I really hope that they have a partnership with a company that can help her.
That whole family is gorgeous. So much light and understanding of unconditional love. Fills my heart right up.
The calm and caring manner they show is really striking! I hope they have the support and resources they need, such a lovely family deserves the best resources!
Seeing how much Evely connects with music, it would be amazing if the older sister learns to play some instruments, even mom too, the connection and communication between them all would be ever tighter, I love to see how much they care for each other, I wish them all a lifetime of happiness filled with beautiful music
That’s a great idea
@@bonniethemonkey647 evely is the disabled younger sister
Well... imo it has to come from her (big sister)
She said she hasnt slept in 4yrs. I dont know she has time to learn how to play an instrument.
And if they don’t, music therapy seems like a good idea as well! ☺️
the older sister has this intuition where she can understand exactly what the little sister is feeling… such a beautiful bond! ❤️
I hope the mother and the older sister are receiving their own special care and attention. Perhaps some therapy. I hope the older sister isn’t falling too much in the background. She deserves attention too and a space to talk about her feelings with this all and to be more than just a caretaker as well, as does the mother. It’s unrealistic and harmful to think they have nothing but positive feelings all the time about the situation. I hope she has plenty time to just be a kid too as well as the “responsible big sister”. Much love and healing to everyone involved 💗
My thoughts exactly
Based on how they dress and how happy and amazing the older sister is, I am sure she gets a good amount of attention. Her heart is so pure and sweet. You can tell that they're well taken care of.
@@Gkmandy The older sister does not look happy to me. She looks burdened. I know that look, cause I had it as a child. Too much responsibility and caretaking going on.
@@regularity2556 I understand completely. This isn't the moms fault, but it's painful to see a child in that state. They're forced to grow up too fast and accept being an afterthought.
@@raginireddy3 Therapy, counseling, CPS if she's low on resources or extra hands. You're never too old to get help
i dont think i will ever see something as sweet as this baby putting her hand on the guitar, completely entranced, and then reaching for momma right after ( 7"38 ) sweet, sweet family.
me too
You can see a really transcendental connection 💝💝💝
A heartwarming moment the way Evely touches the guitar feeling the music that seems to soothe and calm her. Much credit to the mom for clearly taking good care of her beautiful little girls. Blessings to her and her gorgeous daughters.
I have two disable kids very difficult but special at the same time i am so tired but video's like this gives me strength
♥️
I really wish you the best. It can be so tiring, you are very strong! 💪🏽♥️
Stay strong ❤️ sending you much love
stay strong!!! ❤️❤️❤️
What is wrong with another girl? I see only one special child.
The energy this mother has to summon each day amazes me. I'm worn out half way through this video and this lady has to keep going. The girls look gorgeous and their hair is done, too. My kids are grown and moved away and I haven't done my hair in days. I'm too lazy for life.
We are the same sister 😂
I agree with you 1000%
🤣🤣omg I love you
That's really incredible how she cried when she wanted him to change the tempo of the music he was playing, and that literally the _second_ he slows down she instantly stops crying, puts her hand back on the guitar, and puts her head back down to contently listen to and feel the music. That she's so young and already so competently capable of letting people know what she wants or how she feel. I also find out incredible how somebody like her who's never seen a face in her life somehow still has the instinct to smile, that's just something I've always found fascinating about people who are born blind.
I'm sure there are many challenges and frustrating moments too, but despite everything Evely seems like a happy little girl with an amazingly loving family and support system. I know this video is a few years old so I'd love to see an update on their beautiful family!
I believe that Evely might have a really good musical hearing, firstly because she enjoys music SO much, secondly because she notices changes in pace (and I am sure, that she also can feel, when the music is sad or happy), thirdly, because she has chosen music to be her way of communication. She also dances and touches the guitar to feel the vibration of sound, that's amazing. It seems that she enjoys music to the fullest, there are not many people capable of such deep feeling and understanding sounds. And by understanding I do not always mean knowing something by knowledge, but also feeling. I am so happy, that you have such a loving family, Evely!
Yeah you right, but I think every person is capable of doing so. It isn’t like you have a choice, when frequencies hits your brain it’s like sand or water placed on top of a speaker.
No vision, the vibrations and frequencies can lighten a mood . The mother is very strong , I’m going to stop complaining about my exhaustion from my children and just remember this woman’s struggles . Beautiful girl I wish her nothing but happiness and her sister ❤️❤️
God bless🙏🏻🙏🏻💕
I was thinking the same thing.
That’s sweet but your feelings are valid. Don’t minimize and ignore your own personal experiences as a mom. You have every right to feel however you feel and express your complaints.
The immediate noticeable difference that Chris playing the guitar makes for her is really amazing to see. Music is such a powerful thing. It's healing and cathartic to say the least.
This mom is AMAZING. She is just wonderful. She is doing such a wonderful job with both her daughters. So strong & loving. Much, much respect to her.
She's so cute when she started dancing xD Bless her
God loves u all and He makes NO mistakes. He took our punishment on cross & rose three days later with our spirits & we can have Eternal Life if we call upon His name. He saved u
He can save you)
@@jorge-ov5sg 0kki
@@jorge-ov5sg 0kkik
Same?
I think more should be done to help mothers and other people around the world to fully understand and support children with disabilities. Much respect goes out to all the parents who took their time to help these children.
it’s beautiful they talk about all the ways to communicate. her crying isn’t bad, it’s a great thing as she is able to communicate that way. and he responds so well and sweet. this is huge for this little girl to be understood like that.
8:29 broke my heart
This poor woman. I hope it brings her some peace knowing her little girls are both happy, and she’s doing an amazing job.
It's heartbreaking to think about how difficult it can be to raise a child with special needs. Mothers love their children no matter what, but not all of them mentally strong enough to actually spend all their life to taking care of another humam being 24/7. I wish every true mother on this planet is doing good and happy, just like her children
I hope the big sis also gets the care and love that she needs. Having a family member who is disabled can be really tough… Especially when they get older and bigger. It seems the little sister is stuck with the mind of a one year old. She behaves exactly like a one year old.
What does she have
@@notjustanotherharlow4776 ... are you being serious or just joking? Have you considered reading the title and watching the video fully? Her disease is unknown
yes, I feel for the sis. a bright and beautiful soul but being made to step into support mom because maybe mom doesn't have all the energy and resources. I think she's going to have to work through some feelings about being parentified when she's older, and having all the attention being given to her disabled sister, but hopefully she is strong and comes out the other side on her own two feet. Hoping for lots of love and support for her too.
The older sister is not being parentified... I'm under the impression that while much of her mom's energy goes to the younger sister, the mom loves both of her gorls equally and strives to give them both love and attention they need. The older sister knows that her needs are as valid and important, and I get the impression the mom gives 100%, even when she's already tired. She is one of the best mothers and she does not let her daughters down.
I hope they find an answer one day soon. Having a solid diagnosis would make things so much easier
The mom has such a beautiful smile and the kids are so adorable, well dressed and well behave. Sending prayers for this family. I hope they get the answers they are seeking and the help they need 🙏 🙂 ❤️
My former neighbor has a daughter with this condition she should be about 20 now but has the mentality of a 2 year old toddler. She calls her "my forever baby" and she is a saint because a lot of people can't handle this type of care.
Yea
It's sad to think about what will happen to her daughter when she's not around anymore. I'm sure these parents are haunted by the thought. So heartbreaking
Isn't this the only discovered case?
@@SimonB. no it's a rare condition like I said my neighbor has it
@@dabarawahjacob7970 but the title said it
What a gorgeous family! I hope Evely has been tested for Metachromatic Leukodystrophy (MLD). A dear friend of mine has a daughter with MLD and they appear quite similar. 💖💖💖
This is more than likely Rubinstein Taybi Syndrome, see the broad thumb?
This seems like a very plausible diagnosis to consider. And I agree, beautiful family inside and out.
I had no idea my comment had garnered so many likes - I received no notifications. Thank you everyone for being so kind. 💖
@@daniellerocco8237 I'm glad at least someone else thinks so too. It's tough after witnessing it firsthand.
@@sarahcoletti6946 Encounter Ministries CZcams page. (Mark Hemans)+
I know it’s been three years since I’ve seen this, but I gotta say, that momma is an absolutely beautiful soul, and it is reflected on her children. The world needs more compassionate, loving, caring and supportive parents like her. My mom is 85 now, and still the most beautiful person I know. I got my ability to love unconditionally, my strength, and parts of my personality from her, and how to be grateful for everything, even the bad because we learn from it too. She’s a beautiful soul too. 💗💗💗
Not only is this a physically beautiful family, but they have amazing personalities and beautiful hearts as well.
I also have a little sister with microcephaly, she is 10 years old, she also loves music soo much. I can undestand her sister very well, understand what she feels, understand what does she mean, when she said"I love my sister." This is a high form of love, that not all people cannot even imagine. I love my sister, too. God blesses you, sis.✊❤❤❤
I’m so glad little Evely is surrounded by the best humans on earth. Her mother and sister are beautiful inside and out, and I wish absolutely everything that is good to happen for this family 💗
I love seeing that unconditional love in her mother's eyes. We all know how hard it must be to have a child requiring around the clock the care but she still smiles through it. That little girl is absolutely beautiful and I hope they get some answers to give her the best life she could possibly have. God bless them all. Love and prayers 🖤
Hey um disabled kids aren’t a charity case. I agree that mom is amazing, but not for having and “handling” her disabled kid, just for being a good parent. Disabled kids arent a charity case, or something for you to pity. We are people. Also, o one deserves a medal for taking care of your disabled kid. Bc we don’t exist for parents to be pitied and praised for caring for us. :)
Uhhh…most kids require round the clock care at that age, anyway. The mom is super cool but let’s not pretend that the bar is “parent actually loves and takes care of kid”.
@@Ms3queen well, she'll likely need around the clock care for most if not her entire life
@@Willow._.tree. Raising children is hard, raising mentally or physically ill/ disabled children is five times harder. Of course they deserve praise,these parents are heroes of true mental strength, love and loyalty.These kids are so difficult to manage.
@@Willow._.tree. YES YES YES! These comments bug me so much!
It would be nice to see her appear on this channel again in a couple years
Her Instagram full of updates
@@ddajani45 what’s the username?
@@Curlygirly777 thediazgirls
yeah , i wonder if her condition will improve
Yes
She loves that guitar my favorite part of this video is how indulged she was when you stimulated those senses
Aww! Evely’s sister is gold. She is so caring and loving!
that big sister is so precious . if these character traits go with her into adulthood , she's going to make a difference in the world
This mother is incredible! Her compassion and patience are unlike anything I have ever seen. She has passed the same qualities on to her daughter, who is so loving and gentle with her little sister. Just a beautiful family all around! Bravo mama. Bravo! 👏
I love how Chris gave this amazing mom a question she had never thought about. That's really special 😊
The most beautiful angelic mother I have ever seen....
The daughters are so beautiful so happy so sweet because of this mom 💕
Made me tear up to see how strong of a connection she has to music... Beautiful little girl and beautiful family. I wish them all the best and many blessings!
Me too. I cried out of the joy she has for music. She LOVES guitar.
God bless this wonderfull Family, i belive he already did it.💚💜💙🧡❤
I love tye fact that her sister has her best interests at heart and loves her and she onows they need to be gentle and beautiful and loved and sister knows everything about her sister I love it I almost cried cause I want this and yo guys are so awesome LET THE LORD KEEP BLESSING YOU GUY'S
Almost forgot a village is everything I wouldn't change a thing love over end sight
My heart literally broke. You really have to appreciate and cherish this precious life given to you.
Thank you for acknowledging other forms of communication besides just speaking. I always find it frustrating when people say that nonverbal disabled people are "incapable of communication" when you can clearly see that they're desperately trying to communicate in other ways. Just because they aren't "speaking" it doesn't mean they have nothing to express. Saying this as someone who had trouble verbalizing as a child.
This young mother is wonderful, so full of love for her daughters. And the girls are so pretty and dressed adorably. A remarkable, loving family. ❤
The way she put her little hand on her guitar.. 🥺😍🤩 I have faith she’s gonna have a wonderful future here on earth with us. She’s legit gorgeous. If she’s the only one with it then she’s rare, she’s perfect the way she is. She was really feeling the vibration of the guitar it seems she has a connection to music and I love that for her. 🥰
Sure what? What does that even mean
@@ScpPeter2 she won't have a wonderful future. What kind of future can she possibly have?? she can't see, talk or walk and has a bunch of other issues.
@@dawnriddler Let's not think that way. She'd be a lot of assistance to have a good future but there is no reason to believe she couldn't have one. A lot of people with disabilities have good futures.
@@dawnriddler shes only 4 right now. You have no idea how much she will change or improve growing up or how her life is gonna be.
Wow. The big sister is amazing. So is Mom! Wait! All three are great people!
Chris, you are such an amazing human being! The world needs more people like you!
oh my eyes !!! I can't stop crying!! She LOVES that guitar!! Thank you for playing that for her, omg!
I just really have a lot of respect for this mom, she did exceptionally well in educating her older child on the younger sibling's physical impairments and still teaching her how to love her sister unconditionally. As a parent she did so well!
It's so cool how she responds to the guitar. Just settles down and listens so attentively, feeling the vibration.
I was sad and this just made me smile. Prayers for the entire family. Shout out to her big sister for being a great big sister ..
Gosh. That mom is an angel.
And Evely is adorable.
Thank you for highlighting how she is connecting and communication through her body language, her cries, and gestures. 👍🏽
It seems to ma that Evely is very aware of her surroundings. The change in her was dramatic when she was absorbed in the vibrations. Her stillness and concentration, with her little hand never out of contact with the guitar, was magical. I also noticed that her movements were a lot more gentle and restrained when she sat beside her big sister.
This wonderful family just radiates love. I hope this tireless mum gets answers that help her to continue providing her daughter the best care possible, and that the good days far outnumber the bad.
the way she connects with the sound and vibrations of that guitar is beautiful. her mama wasnt kidding when she said she loves music. that baby has found what truly speaks to her
I wish she wasn’t blind so she could see how beautiful she was. Her smile is the world….
Yes 🥺❤️
Just like imagine being blind like we never think how great of a thing it is too be able to see hopefully some day there will be a way for blind people to actually see I bet at some point there will be but not soon
She is beautiful. That upset me to.
@@tippedjoshua6802 Technicly there is allready away but it woud depend if she is just blind from her eye or realy totaly blind becouse her brain dont has the function at all .
This comment is absolutely beautiful in itself. ❤️❤️ And I agree, fully.
This family is beautiful, the bond of love they share with each other is unbreakable. Emily is their joy.
The music is key for Emily her interaction with the guitar was an exceptional example. She was putting her hand on it feeling the vibrations, the changes of notes.
She was still and absorbing it for a few minute's.
The toy guitar she was strumming as he played and that means she knows how's its played.
She feels beats, as she claps her hands, she can possible learn patterns of things through rhythms.
Unlocking the mind is unlimited it's when you put limitations via the diagnoses that the brain stops looking for other paths to gain connections.
There is an extreme amount intelligence in her, it's finding those pathways to bring them out that's going to be different for her. Hers is through physical connections and musical instruments, those seem to be the way to do this. As she's blind her senses of hearing, touch, and feeling are intensified beyond ours.
I thought her name was Evely
@@XxEmoGothOutcastxXit is . Idk where they got Emily from lol
This is one of the first SBSK videos I ever saw. What an absolutely incredible big sister and mother, Everly is so so so loved and it is so wonderful to see ❤
Me too!!
I have a special needs son I could see moms frustration and being exhausted even through the laughs in the beginning , her daughters extreme sensory issues must be very difficult at times , stay strong ❤
Yeah, you can see the joy and sorrow, she's strong. I bet you are too!
Omni have to say this so much but you prob didn’t know, disabled kids aren’t a charity case. We don’t exist to be gawked at. No parent deserves praise for taking care of their disabled child. It’s the bare minimum. No parent should be given pity or being told that, “oh your so strong” because they have a disabled child. It’s rude and dehumanizing for us.
@@Willow._.tree. just a cliche statement from someone on the outside looking in showing some support chill my guy damn, is it hard sometimes ..of course . do we expect praise or recognition ..not at all.
@@JayTX. ik but don’t go in the internet about how hard it can be for YOU. It’s unfair to your kid. I’m telling you AS A DISABLED PERSON that it’s not okay
@@Willow._.tree. but sometimes it takes a lot of work to take care of a disabled child that’s why people praise them
How beautiful this family is. The mother is an angel.
Whenever I'm down or having a hard time with my PTSD or Anxiety/panic attacks or Trec. I watch SBSK. I absolutely adore Chris and the community here. It's not often you come across so much genuine love. It gets me every time I see people trying to bring each other up instead of putting each other down!
Beautiful family ❤️
Me too!!!
Me too, my friend❤
I’m writing solely to support the big sister in early adulthood. Videos like this laud the self-sacrifice of the normative sibling at the expense of that sibling’s self-actualization. You can see the sadness and resignation in her eyes; these are vital, normal emotions she has learned to ignore in order to “serve”. This kind of service may well be noble and selfless, but it is a disservice to such an unformed person, who must be CHAMPIONED to grow and become in her own right if she is to live a healthy, happy life.
Yeah i feel sad for the big sister. She has a hard time ahead of her. As does everyone but still.
I can tell you that may be a look of "I'm sad that she can't and won't be able to be like me one day and we can be "normal" together." I say that because my mother had two special need sisters out of seven siblings. One passed before I was even born, and the other is in her 50's. OMG, do I love her so much. No one in our family has EVER felt she was a burden even though we knew we'd all, in some way, have to take care of her. And we've all had to at one point or another. You do it because you love them, not because you feel obligated to. Even as a child, I never felt like that, when my cousins and I were tasked with entertaining and caring for her so my aunts and such could get a break. My mom and her siblings said there was just this feeling of knowing that they had to do it because they didn't trust anyone else to, and no one could love her like they did. There are always those times where you take a breath and pinch the bridge of your nose. But those are few and far between when it's a relative that you love.
@Love love exactly, well said.
@@mbc264 I would add to your beautiful comment, though, that your Mom was one of SEVEN siblings. Assuming a mother and father were present and reasonably functional,
That means seven people to help share the care for two people who have special needs, which hopefully meant more shared tasks, more love, more attention, more security, more resources for everyone.
The Mom says Elly has an "amazing village" to help care for her, which encourages me to think they have a support system,
but she also says she has not really slept in four years. If she is not in some good quality therapy to process the worry and anxiety she describes, I hope she can seek some.
(And its not all old fashioned talking therapy, though that is still good! There are interesting new types, like CBT, EMDR and neurofeedback therapy, that are producing great results)
The simple anxiety of loving a child with an unknown generic disorder (which comes with no real answers or prognosis) must be immense.
She deserves the best care, and her other child(ren) deserve a Mom who provides herself with good selfcare.
Its so important.
@@melissasaint3283 7, yes, but she wasn't the oldest. Her brother was put of the house when my two special needs aunts were alive. So that leaves 4 including my mom. Then one of my aunts had a baby in high school, so that added a child. My grandfather was a foreman, so he was always working. My aunt with Downe Syndrome was one of the younger siblings; the other was profoundly mentally disabled and in a wheelchair and not verbal. My mom's mother also worked. My mother's family worked a lot like this one. It's wasn't until my aunts started having more kids and we got older that there was more help, at least for my aunt with Downe Syndrome, as Mt other aunt had already died. It does take a village and our family is that, but it wasn't quite always like it is now, or like it was once we got to 6 and up. I wouldn't change anything though. My aunt is.....a highlight of my life. I have never seen her sad unless someone has died and she understood, like when my dad died. Seeing her cry at his funeral was painful for me. She loved my dad. Called him "Brother Bill" She is such a homebody. She lives with my mom's younger sister, and that's where she prefers to be. She stayed with us for two weeks when my aunt wasn't feeling well because she has heart issues and she was excites for a few days.....then she asked when she could go home. She'd have WALKED home if she could've. I thought she was going to run through the wall when we finally took her home!! 🤣 🤣 🤣 🤣
I wish I had a big sister like that! She is going to grow up to be an amazing and inspirational person and Evely is so lucky to have her :-)
This women is an AMAZING mom, her oldest is so wise and the little one is so well loved and happy. You can just tell ❤️
Your girls are a proof of the kind of mother you are. Your absolutely amazing at being their mom. They are blessed.
7:39 I know youve heard it a thousand times but youre playing an instrument (very well), maintaining a connection with Evely and interviewing the mom. dude youre in your zone and its magical every video. born for this
I know that you can't always tell from a clip on CZcams video how someone is truly doing, but I feel after watching this film, that these are such wonderful humans - this family is literally the sweetest, most loving people I have ever seen! I realize that every human on earth has their own stress and their own struggles at some point, but although this family has obviously seen their share of obstacles (and then some!), it is easy to see how happy and loving they are - they're all so gentle, caring, hopeful and grateful and STRONG! It fills me with joy and love to see how wonderful this family is and how they take care of each other's needs unwaiveringly. The mama is SO lovely - inside and out and I deeply admire her positivity and grace! She's kept her poise in the midst of a very hard journey. One that I pray that I would handle things half as well as she does! Her daughters are just as amazing as she is! It is rare to see people love their families hard - unconditionally - the way these beautiful humans do! ❤ I can truly say, at the end of the day, I genuinely feel inspired by everyone involved with this video, the family, etc... and in some small way, I believe it has helped me grow today! Thank you ladies for letting us into your lives, may you always be blessed, as much as or more than you already are! I truly hope they continue to do well and are blessed even more than they are already 😀 and to the channel and their people, who made this video possible - THANK YOU for sharing! It is important work you guys are doing!
What a BEAUTIFUL, sweet family...and that big sister juat brings tears to my eyes, the little doll...and mom is a gorgeous, sweet calm spirit...that little baby is so loved.
She's such a great big sister,I absolutely love the way she takes care of her.
I watched this last year before I entered a teaching program. I was really nervous about teaching and was questioning whether this was what I wanted to do, and this video is one of the few videos I watched that really reminded me of why I wanted to start teaching in the first place. I also want to bring music into the classroom and use that to connect with my students, and it's done so beautifully and wonderfully here. I wanted to comment last year but couldn't. Glad I can do that now :)
10/25/2021
Such a beautiful family, buy the older daughter a 🎸 guitar, amp, and a microphone 🎤from a pawnshop to get some hands-on, self taught training just for fun☺️ making 🎵music🎶 for her little sister and keeping a smile on her face.
Two wonderful children with such a loving mother 💖 thank you for shearing your stories with us!! Xx
So cool how the sister has figured out how to get through to her! Families like this need all the support we can give.
My heart goes out to that mother. The sister is affected as well. I hope she seeks respite care. She probably needs therapy to deal with her own anxiety. I myself would seek the assistance of a natural health doctor to help with the sensory issues. It will improve her quality of life and remove obstacles to her learning.
First of all so unbelievably happy fir you guys that the comments are back. Yay! Evely’s mother and sister are such special people absolute angels. Watching Evely enjoying your guitar playing was very moving.
What an intense, hard, beautiful episode. My parents experienced the “what if she stops right here” with my sister, who’s 29, autistic, nonverbal, and has severe epilepsy. I’m younger than her but have been the “older sibling” in many situations. I did my best to mask how hard it was, how much it traumatized me to be trapped in a car with her screaming and hitting us. I remember my mom running off the road because my sister hit her in the head until she was unconscious, and I had to call the police at 7.
My parents refused to let me into support groups for siblings of developmentally disabled children, because they thought I should be able to deal with it on my own. I wasn’t able. I love my sister so deeply, but I wish I had had a support system.
Evely is such a happy child. This musical connection she have with her family is amazing. She feels the music like no one I've seen and it's her own unique language. I wish Evely and her family the very best.
based boa pfp
her connection to music is just amazing as well
These two sisters are a match made in heaven. Hope the mother has started to get rest. Rest is important! Don't feed into diagnosis too much. Accept your child as they are, THANK God for them, and LOVE them while their here. Emily is happy in life. Thats enough.
What a beautiful woman and mother🥰 She’s so awesome, and her daughters look very well taken care of ❤ Such a loving family!
I'm crying! Evely loves music, singing, and dancing... she really feels it! It's so touching to watch her enjoy herself.