Living with an Unknown Genetic Syndrome (The Only Discovered Case)

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
SBSK Socials:
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/ chrisulmer
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Пікірлер: 3 400

  • @thatbmorechickfoodiecookin500
    @thatbmorechickfoodiecookin5002 жыл бұрын

    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."❤️

  • @rabiusmanawobajo918

    @rabiusmanawobajo918

    2 жыл бұрын

    She loves her just the way that the creator created her!

  • @loveyloveydovey

    @loveyloveydovey

    2 жыл бұрын

    she is a child so her wording won’t be 100%

  • @katiegarrison9414

    @katiegarrison9414

    2 жыл бұрын

    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

  • @MrRichManGuy

    @MrRichManGuy

    2 жыл бұрын

    What else would she mean by that i'm curious?

  • @MrRichManGuy

    @MrRichManGuy

    2 жыл бұрын

    @@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.

  • @rilianelucifen876
    @rilianelucifen8762 жыл бұрын

    That mom really knows how to dress her kids, they're absolutely adorable!

  • @Abergavenny4Ever

    @Abergavenny4Ever

    2 жыл бұрын

    And the bows!! I am in love with those bows!!

  • @moniqueharris5104

    @moniqueharris5104

    2 жыл бұрын

    Right💪🏾❤️

  • @aasenprivate5199

    @aasenprivate5199

    2 жыл бұрын

    Absolutely

  • @1lyxariii

    @1lyxariii

    2 жыл бұрын

    Yh

  • @daisy1439

    @daisy1439

    2 жыл бұрын

    She’s a really good mom too

  • @mya6506
    @mya65062 жыл бұрын

    2:52 I love how her older sister immediately knew what was wrong🥺

  • @max1mum_yt

    @max1mum_yt

    2 жыл бұрын

    what an amazing sister omg ❤️

  • @Aequorine

    @Aequorine

    2 жыл бұрын

    I know!

  • @enzaissodead

    @enzaissodead

    2 жыл бұрын

    That part actually got me dying

  • @user-jl6dy2hw7n

    @user-jl6dy2hw7n

    Жыл бұрын

    She is so smart and sweet

  • @ns2110theonly
    @ns2110theonly2 жыл бұрын

    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.

  • @ameg2707

    @ameg2707

    Жыл бұрын

    💯❤️

  • @SriVR
    @SriVR2 жыл бұрын

    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 ^^

  • @angelababb6499

    @angelababb6499

    2 жыл бұрын

    an amazing beautiful family and credit to the mum

  • @XxredxapplexX

    @XxredxapplexX

    2 жыл бұрын

    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!

  • @a13x38

    @a13x38

    2 жыл бұрын

    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

  • @tomgray7616

    @tomgray7616

    2 жыл бұрын

    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!

  • @pumpkinpatch9790

    @pumpkinpatch9790

    2 жыл бұрын

    I have an little sis who does do music therapy sometimes and she really likes Fireflies By Owl City

  • @kaseybrown5770
    @kaseybrown57702 жыл бұрын

    The mom is such a beautiful woman not just her physical appearance but her heart shines through..such a true Gem of a human

  • @mjay5390

    @mjay5390

    2 жыл бұрын

    So agree!

  • @Wee-Snaw

    @Wee-Snaw

    2 жыл бұрын

    @You're Brainwashed Maybe it's because you're brainwashed

  • @rebrock67

    @rebrock67

    2 жыл бұрын

    I think the same thing about the older daughter. A good and pure heart.

  • @lloydhollycribbs1893

    @lloydhollycribbs1893

    2 жыл бұрын

    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....

  • @somebody9140

    @somebody9140

    2 жыл бұрын

    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".

  • @Erica937.
    @Erica937. Жыл бұрын

    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 ❤️

  • @Erica937.

    @Erica937.

    Жыл бұрын

    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 😭

  • @Zeeeeeeeex
    @Zeeeeeeeex Жыл бұрын

    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 ❤

  • @user-eq7nj1qz1k

    @user-eq7nj1qz1k

    10 ай бұрын

    Yeah, noticed that 😊

  • @YourNextDoorNeighborA

    @YourNextDoorNeighborA

    10 ай бұрын

    I came to comments to mention the same thing. It was kind of undeniable.

  • @janedoex1398

    @janedoex1398

    3 ай бұрын

    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.

  • @rheivyn
    @rheivyn2 жыл бұрын

    "Is there anything special about your sister?" "Yes." "What is it?" "She hugs me a lot when she gets excited."

  • @solleon4568

    @solleon4568

    2 жыл бұрын

    The sweetest moment 🥰

  • @holywarrior1785

    @holywarrior1785

    2 жыл бұрын

    That had me in tears

  • @rhondajohnson39

    @rhondajohnson39

    2 жыл бұрын

    So precious!!!

  • @torresdestinya82

    @torresdestinya82

    2 жыл бұрын

    I love it

  • @lovelybarrientos3254

    @lovelybarrientos3254

    2 жыл бұрын

    Made me squeal 😂 that was so wholesome.

  • @blaseblasebih5706
    @blaseblasebih57062 жыл бұрын

    "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! ❤

  • @KingDuckSauce

    @KingDuckSauce

    2 жыл бұрын

    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!

  • @blaseblasebih5706

    @blaseblasebih5706

    2 жыл бұрын

    le thanks! And best wishes to you too! I'm glad you're starting early, your 30 year old self will be so thankful💐

  • @vanessaprice8395

    @vanessaprice8395

    2 жыл бұрын

    Hahaha amen!

  • @bebex599

    @bebex599

    2 жыл бұрын

    @@KingDuckSauce I learned it at 48. But I'm happy I did.

  • @kellyadams6487

    @kellyadams6487

    2 жыл бұрын

    Yes! Can we get some HUGE love and respect for mom. ❤️

  • @blueturtle3623
    @blueturtle36239 ай бұрын

    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.

  • @milan0404

    @milan0404

    9 ай бұрын

    did u expect to feel a vibration.. 💀

  • @blueturtle3623

    @blueturtle3623

    9 ай бұрын

    @@milan0404 I have an extension that increases my volume, so yes.

  • @sors4r4

    @sors4r4

    9 ай бұрын

    @@milan0404 if you put sound too loud on phone the speaker vibrates so I think he or she did xD

  • @jackgray3190

    @jackgray3190

    8 ай бұрын

    he played blister in the sun by violent femmes

  • @kaidevaleria2531

    @kaidevaleria2531

    5 ай бұрын

    @@milan0404 it does vibrate

  • @nevaehquintano8068
    @nevaehquintano80682 жыл бұрын

    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

  • @Bravohalo
    @Bravohalo3 жыл бұрын

    Her sister is like she was sent on purpose. The musical connection is fascinating.

  • @NeCe1933

    @NeCe1933

    3 жыл бұрын

    Beautiful spirit

  • @aarguellez1803

    @aarguellez1803

    3 жыл бұрын

    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

  • @raiinzyy

    @raiinzyy

    3 жыл бұрын

    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

  • @NicoleLovesJesus89

    @NicoleLovesJesus89

    2 жыл бұрын

    Yes! God blessed her and her family soo much!

  • @user-pk4sv1or5d

    @user-pk4sv1or5d

    2 жыл бұрын

    Старшая сестрёнка, такая заботливая)))

  • @hypochondriacs6050
    @hypochondriacs60502 жыл бұрын

    The older sister is one very smart kid. I feel like she'll be a doctor or someone helping others someday.

  • @beckystewartson6371

    @beckystewartson6371

    2 жыл бұрын

    she’s a lil doc mc stuffins

  • @lionelkennedy1394

    @lionelkennedy1394

    2 жыл бұрын

    She's an awesome big sis ❤

  • @melissasaint3283

    @melissasaint3283

    2 жыл бұрын

    Whatever else she does, I hope she will grow up to also prioritize self care and her own value, worth and importance.

  • @DarkLight847
    @DarkLight8472 жыл бұрын

    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!!!

  • @brody10123
    @brody101232 жыл бұрын

    “Is there anything special about your sister?” “Yes” “What is it?” “She hugs me a lot when she gets excited” My heart

  • @YistheRumGon
    @YistheRumGon2 жыл бұрын

    I get frightened hearing her mother hasn’t slept. This baby needs her momma around as long as possible. She deserves rest ♥️

  • @iemmekeepingitreal7255

    @iemmekeepingitreal7255

    Жыл бұрын

    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

  • @BasicBerry_
    @BasicBerry_2 жыл бұрын

    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

  • @fairone1000

    @fairone1000

    2 жыл бұрын

    Yes!

  • @zapstarfr

    @zapstarfr

    2 жыл бұрын

    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.

  • @undynetheundying5405
    @undynetheundying54052 жыл бұрын

    The mother smiles a lot, and she's so beautiful. Such positivity. She looks so young. I wish all three of them the best

  • @amnedits4898
    @amnedits48982 жыл бұрын

    the older sister has this intuition where she can understand exactly what the little sister is feeling… such a beautiful bond! ❤️

  • @sukatidi
    @sukatidi2 жыл бұрын

    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

  • @gabsasmryt

    @gabsasmryt

    2 жыл бұрын

    i agree!! i wonder if the use of asmr could aid in her cognitive development in a way

  • @PurpleKoco

    @PurpleKoco

    2 жыл бұрын

    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.

  • @christinas.3461

    @christinas.3461

    2 жыл бұрын

    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 :)

  • @rachel4539

    @rachel4539

    2 жыл бұрын

    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.

  • @sukatidi

    @sukatidi

    2 жыл бұрын

    @@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

  • @predestinedvisionsproducti4404
    @predestinedvisionsproducti44042 жыл бұрын

    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

  • @ShortFuseFighting

    @ShortFuseFighting

    2 жыл бұрын

    he didnt...in fact he CURSED THEM....got any MORE bronze age cultist myths to spread around or are you done?

  • @BooglePoots
    @BooglePoots2 жыл бұрын

    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!

  • @nanchapman7047
    @nanchapman70472 жыл бұрын

    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.

  • @danielle_tal
    @danielle_tal2 жыл бұрын

    what a sweet family. The mom's eyes are so expressional and kind like a real-life Disney princess.

  • @ssh1487

    @ssh1487

    2 жыл бұрын

    They're a whole beautiful family, inside and out! It's beyond heartwarming

  • @Boxofcare666

    @Boxofcare666

    2 жыл бұрын

    Would you talk like that if she was white?

  • @arsemaalem4826

    @arsemaalem4826

    2 жыл бұрын

    @@Boxofcare666 who hurt you

  • @danielle_tal

    @danielle_tal

    2 жыл бұрын

    @@arsemaalem4826 don't feed the troll (and if it is a serious reply, this person need some help)

  • @g_lorn

    @g_lorn

    2 жыл бұрын

    @@danielle_tal true but so hard to not answer this piece of *

  • @sierrathesongbird
    @sierrathesongbird2 жыл бұрын

    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.

  • @TheShellybaybee

    @TheShellybaybee

    2 жыл бұрын

    Amen . I agree beautiful soul

  • @deborahthompson5041

    @deborahthompson5041

    2 жыл бұрын

    What a great love they have for sister and child. All are beautiful. GOD is holding them In his hands.

  • @CreamyCraigTV
    @CreamyCraigTV Жыл бұрын

    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.

  • @yvonnesantiago3776
    @yvonnesantiago37762 жыл бұрын

    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.

  • @tokenghost4536
    @tokenghost45362 жыл бұрын

    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.

  • @lerearose8659
    @lerearose86593 жыл бұрын

    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

  • @xxmc06xx7

    @xxmc06xx7

    3 жыл бұрын

    Amen

  • @romanlaursen7292

    @romanlaursen7292

    2 жыл бұрын

    True

  • @alt3632

    @alt3632

    2 жыл бұрын

    True

  • @Lyrics_queen111

    @Lyrics_queen111

    2 жыл бұрын

    Both are beautiful

  • @lerearose8659

    @lerearose8659

    2 жыл бұрын

    @@Lyrics_queen111 of course they are! Who said otherwise?????

  • @marquesbrown931
    @marquesbrown9312 жыл бұрын

    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.

  • @ML-eq6ll
    @ML-eq6ll10 ай бұрын

    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

  • @xiaorishu
    @xiaorishu2 жыл бұрын

    She's so cute when she started dancing xD Bless her

  • @jorge-ov5sg

    @jorge-ov5sg

    2 жыл бұрын

    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

  • @jorge-ov5sg

    @jorge-ov5sg

    2 жыл бұрын

    He can save you)

  • @yokyinmurillo1707

    @yokyinmurillo1707

    2 жыл бұрын

    @@jorge-ov5sg 0kki

  • @yokyinmurillo1707

    @yokyinmurillo1707

    2 жыл бұрын

    @@jorge-ov5sg 0kkik

  • @2605.s

    @2605.s

    2 жыл бұрын

    Same?

  • @lvasquez2978
    @lvasquez29782 жыл бұрын

    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.

  • @briannalue7438

    @briannalue7438

    2 жыл бұрын

    me too

  • @antoinettekankindi6807

    @antoinettekankindi6807

    2 жыл бұрын

    You can see a really transcendental connection 💝💝💝

  • @briyannacampbell
    @briyannacampbell2 жыл бұрын

    She loves that guitar my favorite part of this video is how indulged she was when you stimulated those senses

  • @akdlg9sjjslk8
    @akdlg9sjjslk82 жыл бұрын

    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 💗

  • @griffithdidnothingwrong5
    @griffithdidnothingwrong52 жыл бұрын

    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 💗

  • @Likelyfairy

    @Likelyfairy

    2 жыл бұрын

    My thoughts exactly

  • @Gkmandy

    @Gkmandy

    2 жыл бұрын

    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.

  • @regularity2556

    @regularity2556

    2 жыл бұрын

    @@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.

  • @TearraC

    @TearraC

    2 жыл бұрын

    @@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.

  • @victoriapulcifer6218

    @victoriapulcifer6218

    2 жыл бұрын

    @@raginireddy3 Therapy, counseling, CPS if she's low on resources or extra hands. You're never too old to get help

  • @thuliramasodi7417
    @thuliramasodi74173 жыл бұрын

    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

  • @infinitalocura

    @infinitalocura

    3 жыл бұрын

    ♥️

  • @kbains3955

    @kbains3955

    3 жыл бұрын

    I really wish you the best. It can be so tiring, you are very strong! 💪🏽♥️

  • @malovina

    @malovina

    3 жыл бұрын

    Stay strong ❤️ sending you much love

  • @zaruzoba

    @zaruzoba

    2 жыл бұрын

    stay strong!!! ❤️❤️❤️

  • @user-es3rl3bb3u

    @user-es3rl3bb3u

    2 жыл бұрын

    What is wrong with another girl? I see only one special child.

  • @celestek.2395
    @celestek.23959 ай бұрын

    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. 💗💗💗

  • @veryverte
    @veryverte9 ай бұрын

    I love how Chris gave this amazing mom a question she had never thought about. That's really special 😊

  • @rocksoft1236
    @rocksoft12363 жыл бұрын

    Intelligent child! I love how she connects with guitar by touching it. She recognize there is a source and connects with it.

  • @blueskiesclearwater

    @blueskiesclearwater

    2 жыл бұрын

    What a deep statement for us all. There is a source, connect with it.

  • @jessesims6232
    @jessesims62322 жыл бұрын

    That whole family is gorgeous. So much light and understanding of unconditional love. Fills my heart right up.

  • @Heather-xm9ul

    @Heather-xm9ul

    2 жыл бұрын

    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!

  • @bigfoot135
    @bigfoot1352 жыл бұрын

    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 🙏 🙂 ❤️

  • @bluewarters7058
    @bluewarters70582 жыл бұрын

    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

  • @bluewarters7058

    @bluewarters7058

    2 жыл бұрын

    Almost forgot a village is everything I wouldn't change a thing love over end sight

  • @layahYasharahla
    @layahYasharahla2 жыл бұрын

    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 ❤️❤️

  • @cristleheart4266

    @cristleheart4266

    2 жыл бұрын

    God bless🙏🏻🙏🏻💕

  • @kekelavan8688

    @kekelavan8688

    2 жыл бұрын

    I was thinking the same thing.

  • @magnolia2

    @magnolia2

    Жыл бұрын

    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.

  • @katarzynanowak2087
    @katarzynanowak20873 жыл бұрын

    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!

  • @dinomight_nxc

    @dinomight_nxc

    2 жыл бұрын

    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.

  • @AstraSystem
    @AstraSystem2 жыл бұрын

    It's so cool how she responds to the guitar. Just settles down and listens so attentively, feeling the vibration.

  • @cydkriletich6538
    @cydkriletich653811 ай бұрын

    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. ❤

  • @followthepolo2704
    @followthepolo27043 жыл бұрын

    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

  • @urbanumbra6170

    @urbanumbra6170

    3 жыл бұрын

    That’s a great idea

  • @8t394an13

    @8t394an13

    3 жыл бұрын

    @@bonniethemonkey647 evely is the disabled younger sister

  • @niennaarcturus

    @niennaarcturus

    2 жыл бұрын

    Well... imo it has to come from her (big sister)

  • @ophelialise

    @ophelialise

    2 жыл бұрын

    She said she hasnt slept in 4yrs. I dont know she has time to learn how to play an instrument.

  • @icanbeyourgeniehowboutalad5158

    @icanbeyourgeniehowboutalad5158

    2 жыл бұрын

    And if they don’t, music therapy seems like a good idea as well! ☺️

  • @edvh88
    @edvh882 жыл бұрын

    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.

  • @peachnightlight
    @peachnightlight Жыл бұрын

    How beautiful this family is. The mother is an angel.

  • @BeautyfromAshes1971
    @BeautyfromAshes19712 жыл бұрын

    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.

  • @XxEmoGothOutcastxX

    @XxEmoGothOutcastxX

    Жыл бұрын

    I thought her name was Evely

  • @extrashotofespresso_

    @extrashotofespresso_

    Жыл бұрын

    @@XxEmoGothOutcastxXit is . Idk where they got Emily from lol

  • @katiegarrison9414
    @katiegarrison94142 жыл бұрын

    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.

  • @keneciavalcin1345

    @keneciavalcin1345

    2 жыл бұрын

    We are the same sister 😂

  • @detroit313diiiiva9

    @detroit313diiiiva9

    2 жыл бұрын

    I agree with you 1000%

  • @tarrynkoko602

    @tarrynkoko602

    2 жыл бұрын

    🤣🤣omg I love you

  • @DiamondWhite91
    @DiamondWhite912 жыл бұрын

    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.

  • @notjustanotherharlow4776

    @notjustanotherharlow4776

    Жыл бұрын

    What does she have

  • @katet8639

    @katet8639

    Жыл бұрын

    ​​@@notjustanotherharlow4776 ... are you being serious or just joking? Have you considered reading the title and watching the video fully? Her disease is unknown

  • @Uchihasasuk5

    @Uchihasasuk5

    Жыл бұрын

    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.

  • @grayowl167

    @grayowl167

    9 ай бұрын

    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.

  • @shanbanan7414
    @shanbanan7414 Жыл бұрын

    Chris, you are such an amazing human being! The world needs more people like you!

  • @harshofficial6495
    @harshofficial64959 ай бұрын

    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

  • @Zzz2x
    @Zzz2x3 жыл бұрын

    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.

  • @nuraykurman3911
    @nuraykurman39112 жыл бұрын

    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.✊❤❤❤

  • @ev8870
    @ev88702 жыл бұрын

    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.

  • @microhoarray
    @microhoarray Жыл бұрын

    She responds to music. She looks unresponsive to all the other things but she responds to music isn’t that interesting? Amazing

  • @dabarawahjacob7970
    @dabarawahjacob79703 жыл бұрын

    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.

  • @dayjonagarrett957

    @dayjonagarrett957

    3 жыл бұрын

    Yea

  • @idek7438

    @idek7438

    3 жыл бұрын

    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

  • @SimonB.

    @SimonB.

    3 жыл бұрын

    Isn't this the only discovered case?

  • @dabarawahjacob7970

    @dabarawahjacob7970

    3 жыл бұрын

    @@SimonB. no it's a rare condition like I said my neighbor has it

  • @SimonB.

    @SimonB.

    3 жыл бұрын

    @@dabarawahjacob7970 but the title said it

  • @heather5540
    @heather55402 жыл бұрын

    I hope they find an answer one day soon. Having a solid diagnosis would make things so much easier

  • @linzigold112
    @linzigold112 Жыл бұрын

    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 :-)

  • @lindaclarke1710
    @lindaclarke17102 жыл бұрын

    She's such a great big sister,I absolutely love the way she takes care of her.

  • @kairo333
    @kairo3332 жыл бұрын

    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! 👏

  • @carriejones1956
    @carriejones19562 жыл бұрын

    Not only is this a physically beautiful family, but they have amazing personalities and beautiful hearts as well.

  • @OrieCipollaro
    @OrieCipollaro Жыл бұрын

    So cool how the sister has figured out how to get through to her! Families like this need all the support we can give.

  • @Inannarising
    @Inannarising Жыл бұрын

    What a beautiful woman and mother🥰 She’s so awesome, and her daughters look very well taken care of ❤ Such a loving family!

  • @urbanumbra6170
    @urbanumbra61703 жыл бұрын

    It would be nice to see her appear on this channel again in a couple years

  • @ddajani45

    @ddajani45

    2 жыл бұрын

    Her Instagram full of updates

  • @Curlygirly777

    @Curlygirly777

    2 жыл бұрын

    @@ddajani45 what’s the username?

  • @ddajani45

    @ddajani45

    2 жыл бұрын

    @@Curlygirly777 thediazgirls

  • @TeKeyaKrystal

    @TeKeyaKrystal

    2 жыл бұрын

    yeah , i wonder if her condition will improve

  • @kalielik

    @kalielik

    2 жыл бұрын

    Yes

  • @stephaniewilburn592
    @stephaniewilburn5922 жыл бұрын

    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 🖤

  • @Willow._.tree.

    @Willow._.tree.

    2 жыл бұрын

    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. :)

  • @Ms3queen

    @Ms3queen

    2 жыл бұрын

    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”.

  • @soph_f16

    @soph_f16

    2 жыл бұрын

    @@Ms3queen well, she'll likely need around the clock care for most if not her entire life

  • @iknowwhatyoudid9979

    @iknowwhatyoudid9979

    2 жыл бұрын

    @@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.

  • @yas-per

    @yas-per

    2 жыл бұрын

    @@Willow._.tree. YES YES YES! These comments bug me so much!

  • @SleepyT23
    @SleepyT23 Жыл бұрын

    the auditory stimuli reminds me a lot of my son who has kabuki syndrome. This child does not look like she has that at all obviously, but it is so funny how certain things in particular like clapping or repetitive sounds--and MUSIC can make these kids so happy. Whatever Evely has, this mom is awesome and that kiddo is fantastic. Her reacting to the guitar just makes me smile. Mom is doing a fantastic job raising not only her older, neurotypical child, but also a child that is literally like raising many in 1.

  • @alily375
    @alily375 Жыл бұрын

    when he played the guitar did you see for the first time she was able to stopped her movements. it’s amazing how much the music is enough.

  • @miad6160
    @miad61602 жыл бұрын

    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.

  • @Raven74408
    @Raven744082 жыл бұрын

    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.

  • @samar2741
    @samar27412 жыл бұрын

    For mom - you are so special and loving, I can feel your love radiate through the screen. It’s so inspiring. Keep it up!!

  • @krismiskarol
    @krismiskarol Жыл бұрын

    Omg when he played guitar for her i just melted. What a wonderful big sister and mother she has as well ♥️ Love that i came across this today

  • @pauljean-francois8897
    @pauljean-francois88973 жыл бұрын

    My heart literally broke. You really have to appreciate and cherish this precious life given to you.

  • @sarahcoletti6946
    @sarahcoletti69462 жыл бұрын

    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. 💖💖💖

  • @mizmelmess

    @mizmelmess

    2 жыл бұрын

    This is more than likely Rubinstein Taybi Syndrome, see the broad thumb?

  • @daniellerocco8237

    @daniellerocco8237

    2 жыл бұрын

    This seems like a very plausible diagnosis to consider. And I agree, beautiful family inside and out.

  • @sarahcoletti6946

    @sarahcoletti6946

    2 жыл бұрын

    I had no idea my comment had garnered so many likes - I received no notifications. Thank you everyone for being so kind. 💖

  • @sarahcoletti6946

    @sarahcoletti6946

    2 жыл бұрын

    @@daniellerocco8237 I'm glad at least someone else thinks so too. It's tough after witnessing it firsthand.

  • @ronniebattle1310

    @ronniebattle1310

    2 жыл бұрын

    @@sarahcoletti6946 Encounter Ministries KZread page. (Mark Hemans)+

  • @miamehela9031
    @miamehela903111 ай бұрын

    The future will tell the truth about the old sister. She is too sad to be happy and sometimes her mouth tells yes and her hands tell no.

  • @dlk1422
    @dlk1422 Жыл бұрын

    She is just the sweetest. And your older daughter is so kind and smart. Prayers to both your girls and family.

  • @mandysieg6856
    @mandysieg68562 жыл бұрын

    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!

  • @yolanda.martinez

    @yolanda.martinez

    2 жыл бұрын

    Me too. I cried out of the joy she has for music. She LOVES guitar.

  • @moon-ut1oy

    @moon-ut1oy

    2 жыл бұрын

    God bless this wonderfull Family, i belive he already did it.💚💜💙🧡❤

  • @msflower1661
    @msflower16612 жыл бұрын

    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!

  • @adnilem7070
    @adnilem707010 ай бұрын

    There is no doubt she needs to do something with music, it’s incredible how much it soothes her.

  • @miikamona
    @miikamona Жыл бұрын

    Everytime i see this video i smile... her girls are just soo beautiful inside and out and both are very bright. Im just amazed how at only 4yrs old she has found her own way of communicating. I hope mommy is getting good rest these days because even though she doesn't have all the answers shes doing an amazingly good job with whatever shes doing now ❤ would love to get an update

  • @sheenaldeo
    @sheenaldeo2 жыл бұрын

    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. 👍🏽

  • @TheShellybaybee
    @TheShellybaybee2 жыл бұрын

    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 ..

  • @Raichu420
    @Raichu4202 жыл бұрын

    I so enjoy the footnotes you put in about communication. THANK YOU so much for reminding everyone that crying and other "problem" behaviors are communication.

  • @davidpelton1154
    @davidpelton11542 жыл бұрын

    Dude you really put a tear in my eye watching you being able to control the way she felt just by the tempo of the guitar music is something else

  • @cashee5260
    @cashee52602 жыл бұрын

    oh my eyes !!! I can't stop crying!! She LOVES that guitar!! Thank you for playing that for her, omg!

  • @nancyrahif8442
    @nancyrahif84422 жыл бұрын

    I wish she wasn’t blind so she could see how beautiful she was. Her smile is the world….

  • @Likelyfairy

    @Likelyfairy

    2 жыл бұрын

    Yes 🥺❤️

  • @tippedjoshua6802

    @tippedjoshua6802

    2 жыл бұрын

    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

  • @ism5216

    @ism5216

    2 жыл бұрын

    She is beautiful. That upset me to.

  • @xythiera7255

    @xythiera7255

    2 жыл бұрын

    @@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 .

  • @MsTifalicious

    @MsTifalicious

    2 жыл бұрын

    This comment is absolutely beautiful in itself. ❤️❤️ And I agree, fully.

  • @graceakinnibosun3420
    @graceakinnibosun3420 Жыл бұрын

    Literally brought me to tears such a beautiful family. The mother is doing and awesome job raising those intelligent beautiful children 🥹🥹🥹

  • @RawringReagan
    @RawringReagan2 жыл бұрын

    This family is adorable. She’s really parenting them right. Such a good big sister and mommy to everleigh

  • @kalinsage2063
    @kalinsage20632 жыл бұрын

    The most beautiful angelic mother I have ever seen.... The daughters are so beautiful so happy so sweet because of this mom 💕

  • @maddie1x
    @maddie1x3 жыл бұрын

    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

  • @idontreadorreply
    @idontreadorreply8 ай бұрын

    This is why genetic testing is important, and testing the zygote for abnormalities as well

  • @jiyutheplanet
    @jiyutheplanet Жыл бұрын

    Chris your an inspiration I hope you don’t ever let anyone bring you down

  • @ScpPeter2
    @ScpPeter23 жыл бұрын

    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. 🥰

  • @ScpPeter2

    @ScpPeter2

    2 жыл бұрын

    Sure what? What does that even mean

  • @dawnriddler

    @dawnriddler

    2 жыл бұрын

    @@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.

  • @msheoiko254

    @msheoiko254

    2 жыл бұрын

    @@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.

  • @Galacticguts

    @Galacticguts

    2 жыл бұрын

    @@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.

  • @liasvivo1291
    @liasvivo12913 жыл бұрын

    Aww! Evely’s sister is gold. She is so caring and loving!

  • @TeKeyaKrystal

    @TeKeyaKrystal

    2 жыл бұрын

    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

  • @SuperiorKalosChampion
    @SuperiorKalosChampion2 жыл бұрын

    I had gotten introduced to your videos via Peer Tutoring in sixth grade if Middle school. When we did the at-home learning because of Covid, my peer tutoring teacher had us do watch your videos and answer questions based on the videos. It’s so very heart-warming to watch this videos. As a Freshman in Highschool, it’s a habit now to watch your videos regularly.

  • @Christinapa81
    @Christinapa81 Жыл бұрын

    It is amazing how she responds to music! What a blessing that she has such a loving mother and sister! You can tell she has so much love in her life ❤️