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

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  • Опубліковано 13 лис 2019
  • 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:
    / specialbooksbyspecialkids
    / chrisulmer
    / specialbooksbyspecialkids
    / sbsk

КОМЕНТАРІ • 3,4 тис.

  • @kaseybrown5770
    @kaseybrown5770 2 роки тому +5284

    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 роки тому +34

      So agree!

    • @Wee-Snaw
      @Wee-Snaw 2 роки тому +54

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

    • @rebrock67
      @rebrock67 2 роки тому +88

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

    • @lloydhollycribbs1893
      @lloydhollycribbs1893 2 роки тому +53

      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 роки тому

      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".

  • @SriVR
    @SriVR 2 роки тому +7177

    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 роки тому +140

      an amazing beautiful family and credit to the mum

    • @XxredxapplexX
      @XxredxapplexX 2 роки тому +224

      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 роки тому +48

      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 роки тому +15

      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 роки тому +10

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

  • @mya6506
    @mya6506 2 роки тому +1879

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

  • @Erica937.
    @Erica937. Рік тому +823

    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. Рік тому +15

      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 😭

  • @thatbmorechickfoodiecookin500
    @thatbmorechickfoodiecookin500 2 роки тому +5926

    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 роки тому +107

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

    • @loveyloveydovey
      @loveyloveydovey 2 роки тому +205

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

    • @katiegarrison9414
      @katiegarrison9414 2 роки тому +81

      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 роки тому +18

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

    • @MrRichManGuy
      @MrRichManGuy 2 роки тому +20

      @@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
    @rilianelucifen876 2 роки тому +6639

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

  • @Zeeeeeeeex
    @Zeeeeeeeex Рік тому +461

    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 місяців тому +6

      Yeah, noticed that 😊

    • @YourNextDoorNeighborA
      @YourNextDoorNeighborA 10 місяців тому +6

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

    • @janedoex1398
      @janedoex1398 4 місяці тому +2

      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.

  • @DarkLight847
    @DarkLight847 2 роки тому +787

    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!!!

  • @blaseblasebih5706
    @blaseblasebih5706 2 роки тому +4378

    "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 роки тому +51

      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 роки тому +19

      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 роки тому +5

      Hahaha amen!

    • @bebex599
      @bebex599 2 роки тому +12

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

    • @kellyadams6487
      @kellyadams6487 2 роки тому +5

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

  • @Bravohalo
    @Bravohalo 3 роки тому +5763

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

    • @NeCe1933
      @NeCe1933 3 роки тому +50

      Beautiful spirit

    • @aarguellez1803
      @aarguellez1803 3 роки тому +93

      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 роки тому +67

      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 роки тому +7

      Yes! God blessed her and her family soo much!

    • @user-pk4sv1or5d
      @user-pk4sv1or5d 2 роки тому +3

      Старшая сестрёнка, такая заботливая)))

  • @blueturtle3623
    @blueturtle3623 10 місяців тому +296

    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 10 місяців тому +4

      did u expect to feel a vibration.. 💀

    • @blueturtle3623
      @blueturtle3623 10 місяців тому +2

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

    • @sors4r4
      @sors4r4 10 місяців тому +31

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

    • @jackgray3190
      @jackgray3190 8 місяців тому +6

      he played blister in the sun by violent femmes

    • @kaidevaleria2531
      @kaidevaleria2531 6 місяців тому +4

      @@milan0404 it does vibrate

  • @undynetheundying5405
    @undynetheundying5405 2 роки тому +48

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

  • @ns2110theonly
    @ns2110theonly 2 роки тому +2898

    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.

  • @rheivyn
    @rheivyn 2 роки тому +2748

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

  • @brody10123
    @brody10123 2 роки тому +72

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

  • @nevaehquintano8068
    @nevaehquintano8068 2 роки тому +144

    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

  • @predestinedvisionsproducti4404
    @predestinedvisionsproducti4404 2 роки тому +1185

    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 роки тому

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

  • @hypochondriacs6050
    @hypochondriacs6050 2 роки тому +1983

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

    • @beckystewartson6371
      @beckystewartson6371 2 роки тому +70

      she’s a lil doc mc stuffins

    • @lionelkennedy1394
      @lionelkennedy1394 2 роки тому +11

      She's an awesome big sis ❤

    • @melissasaint3283
      @melissasaint3283 2 роки тому +66

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

  • @nanchapman7047
    @nanchapman7047 2 роки тому +204

    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.

  • @amnedits4898
    @amnedits4898 2 роки тому +125

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

  • @YistheRumGon
    @YistheRumGon 2 роки тому +813

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

    • @iemmekeepingitreal7255
      @iemmekeepingitreal7255 Рік тому +37

      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

  • @sierrathesongbird
    @sierrathesongbird 2 роки тому +821

    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 роки тому +9

      Amen . I agree beautiful soul

    • @deborahthompson5041
      @deborahthompson5041 2 роки тому +11

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

  • @yvonnesantiago3776
    @yvonnesantiago3776 2 роки тому +224

    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.

  • @marquesbrown931
    @marquesbrown931 2 роки тому +162

    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.

  • @BasicBerry_
    @BasicBerry_ 2 роки тому +1302

    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 роки тому +4

      Yes!

    • @zapstarfr
      @zapstarfr 2 роки тому +10

      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.

  • @danielle_tal
    @danielle_tal 2 роки тому +929

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

    • @ssh1487
      @ssh1487 2 роки тому +27

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

    • @Boxofcare666
      @Boxofcare666 2 роки тому

      Would you talk like that if she was white?

    • @arsemaalem4826
      @arsemaalem4826 2 роки тому +74

      @@Boxofcare666 who hurt you

    • @danielle_tal
      @danielle_tal 2 роки тому +38

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

    • @g_lorn
      @g_lorn 2 роки тому +18

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

  • @CreamyCraigTV
    @CreamyCraigTV Рік тому +54

    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.

  • @BooglePoots
    @BooglePoots 2 роки тому +71

    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!

  • @tokenghost4536
    @tokenghost4536 2 роки тому +804

    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.

  • @rocksoft1236
    @rocksoft1236 3 роки тому +1178

    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 роки тому +13

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

  • @ML-eq6ll
    @ML-eq6ll 11 місяців тому +68

    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

  • @bigfoot135
    @bigfoot135 2 роки тому +137

    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 🙏 🙂 ❤️

  • @sukatidi
    @sukatidi 2 роки тому +2809

    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 роки тому +112

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

    • @PurpleKoco
      @PurpleKoco 2 роки тому +92

      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 роки тому +77

      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 роки тому +10

      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 роки тому +52

      @@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

  • @lerearose8659
    @lerearose8659 3 роки тому +3482

    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

  • @akdlg9sjjslk8
    @akdlg9sjjslk8 2 роки тому +124

    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 💗

  • @briyannacampbell
    @briyannacampbell 2 роки тому +22

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

  • @griffithdidnothingwrong5
    @griffithdidnothingwrong5 2 роки тому +2252

    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 роки тому +74

      My thoughts exactly

    • @Gkmandy
      @Gkmandy 2 роки тому +144

      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 роки тому +234

      @@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 роки тому +144

      @@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 роки тому +65

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

  • @jessesims6232
    @jessesims6232 2 роки тому +537

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

    • @Heather-xm9ul
      @Heather-xm9ul 2 роки тому +10

      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!

  • @veryverte
    @veryverte 10 місяців тому +14

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

  • @celestek.2395
    @celestek.2395 10 місяців тому +17

    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. 💗💗💗

  • @lvasquez2978
    @lvasquez2978 2 роки тому +355

    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.

  • @followthepolo2704
    @followthepolo2704 3 роки тому +1897

    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 роки тому +16

      That’s a great idea

    • @8t394an13
      @8t394an13 3 роки тому +3

      @@bonniethemonkey647 evely is the disabled younger sister

    • @niennaarcturus
      @niennaarcturus 3 роки тому +5

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

    • @ophelialise
      @ophelialise 3 роки тому +29

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

    • @icanbeyourgeniehowboutalad5158
      @icanbeyourgeniehowboutalad5158 2 роки тому +13

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

  • @bluewarters7058
    @bluewarters7058 2 роки тому +36

    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 роки тому

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

  • @cydkriletich6538
    @cydkriletich6538 11 місяців тому +18

    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. ❤

  • @katarzynanowak2087
    @katarzynanowak2087 3 роки тому +910

    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 роки тому +3

      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.

  • @xiaorishu
    @xiaorishu 3 роки тому +2864

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

    • @jorge-ov5sg
      @jorge-ov5sg 3 роки тому +18

      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 3 роки тому +6

      He can save you)

    • @yokyinmurillo1707
      @yokyinmurillo1707 2 роки тому +2

      @@jorge-ov5sg 0kki

    • @yokyinmurillo1707
      @yokyinmurillo1707 2 роки тому +1

      @@jorge-ov5sg 0kkik

    • @2605.s
      @2605.s 2 роки тому

      Same?

  • @AstraSystem
    @AstraSystem 2 роки тому +12

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

  • @ev8870
    @ev8870 2 роки тому +45

    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.

  • @thuliramasodi7417
    @thuliramasodi7417 3 роки тому +1306

    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 роки тому +34

      ♥️

    • @kbains3955
      @kbains3955 3 роки тому +59

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

    • @malovina
      @malovina 3 роки тому +32

      Stay strong ❤️ sending you much love

    • @zaruzoba
      @zaruzoba 3 роки тому +12

      stay strong!!! ❤️❤️❤️

    • @user-es3rl3bb3u
      @user-es3rl3bb3u 3 роки тому +2

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

  • @edvh88
    @edvh88 2 роки тому +381

    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.

  • @harshofficial6495
    @harshofficial6495 9 місяців тому +3

    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

  • @shanbanan7414
    @shanbanan7414 Рік тому +28

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

  • @layahYasharahla
    @layahYasharahla 2 роки тому +221

    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 роки тому +2

      God bless🙏🏻🙏🏻💕

    • @kekelavan8688
      @kekelavan8688 2 роки тому +2

      I was thinking the same thing.

    • @magnolia2
      @magnolia2 Рік тому +2

      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.

  • @katiegarrison9414
    @katiegarrison9414 2 роки тому +605

    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.

  • @peachnightlight
    @peachnightlight Рік тому +14

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

  • @linzigold112
    @linzigold112 Рік тому +17

    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 :-)

  • @Zzz2x
    @Zzz2x 3 роки тому +470

    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.

  • @DiamondWhite91
    @DiamondWhite91 2 роки тому +294

    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 Рік тому

      What does she have

    • @katet8639
      @katet8639 Рік тому +9

      ​​@@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 Рік тому +15

      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 10 місяців тому +12

      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.

  • @BeautyfromAshes1971
    @BeautyfromAshes1971 2 роки тому +45

    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.

  • @microhoarray
    @microhoarray Рік тому +6

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

  • @heather5540
    @heather5540 2 роки тому +258

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

  • @miad6160
    @miad6160 2 роки тому +163

    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.

  • @OrieCipollaro
    @OrieCipollaro Рік тому +10

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

  • @lindaclarke1710
    @lindaclarke1710 2 роки тому +11

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

  • @sarahcoletti6946
    @sarahcoletti6946 2 роки тому +608

    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 роки тому +4

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

    • @daniellerocco8237
      @daniellerocco8237 2 роки тому +17

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

    • @sarahcoletti6946
      @sarahcoletti6946 2 роки тому +11

      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 роки тому +11

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

    • @ronniebattle1310
      @ronniebattle1310 2 роки тому

      @@sarahcoletti6946 Encounter Ministries UA-cam page. (Mark Hemans)+

  • @carriejones1956
    @carriejones1956 2 роки тому +315

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

  • @samar2741
    @samar2741 2 роки тому +9

    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 Рік тому +8

    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

  • @dabarawahjacob7970
    @dabarawahjacob7970 3 роки тому +194

    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 роки тому +3

      Yea

    • @idek7438
      @idek7438 3 роки тому +28

      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 роки тому +18

      Isn't this the only discovered case?

    • @dabarawahjacob7970
      @dabarawahjacob7970 3 роки тому

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

    • @SimonB.
      @SimonB. 3 роки тому +6

      @@dabarawahjacob7970 but the title said it

  • @nuraykurman3911
    @nuraykurman3911 2 роки тому +114

    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.✊❤❤❤

  • @dlk1422
    @dlk1422 2 роки тому +2

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

  • @SleepyT23
    @SleepyT23 Рік тому +10

    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.

  • @stephaniewilburn592
    @stephaniewilburn592 2 роки тому +492

    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 роки тому +10

      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 роки тому +6

      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 роки тому +11

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

    • @iknowwhatyoudid9979
      @iknowwhatyoudid9979 2 роки тому +23

      @@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 роки тому +1

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

  • @kairo333
    @kairo333 2 роки тому +67

    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! 👏

  • @alily375
    @alily375 Рік тому +2

    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.

  • @Inannarising
    @Inannarising Рік тому +10

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

  • @bizphyz3461
    @bizphyz3461 3 роки тому +319

    Wow. The big sister is amazing. So is Mom! Wait! All three are great people!

  • @kalinsage2063
    @kalinsage2063 2 роки тому +125

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

  • @miamehela9031
    @miamehela9031 11 місяців тому +7

    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.

  • @Raichu420
    @Raichu420 2 роки тому +1

    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.

  • @urbanumbra6170
    @urbanumbra6170 3 роки тому +286

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

    • @ddajani45
      @ddajani45 2 роки тому +9

      Her Instagram full of updates

    • @Curlygirly777
      @Curlygirly777 2 роки тому +4

      @@ddajani45 what’s the username?

    • @ddajani45
      @ddajani45 2 роки тому +6

      @@Curlygirly777 thediazgirls

    • @TeKeyaKrystal
      @TeKeyaKrystal 2 роки тому +4

      yeah , i wonder if her condition will improve

    • @kalielik
      @kalielik 2 роки тому

      Yes

  • @liasvivo1291
    @liasvivo1291 3 роки тому +424

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

    • @TeKeyaKrystal
      @TeKeyaKrystal 2 роки тому +10

      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

  • @graceakinnibosun3420
    @graceakinnibosun3420 Рік тому +3

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

  • @davidpelton1154
    @davidpelton1154 2 роки тому +2

    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

  • @mandysieg6856
    @mandysieg6856 2 роки тому +99

    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 роки тому +3

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

    • @moon-ut1oy
      @moon-ut1oy 2 роки тому +2

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

  • @pauljean-francois8897
    @pauljean-francois8897 3 роки тому +167

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

  • @KennyDacko333
    @KennyDacko333 Рік тому +6

    What a beautiful amazing mother and family, I love her strength and wisdom and I love this guy for all his good intentions.

  • @camellepillay7155
    @camellepillay7155 2 роки тому +3

    She is absolutely beautiful , and the way her sister is so kind,gentle and loving towards her is just breath taking ,i usually don't watch videos the whole way ,but this just really caught my attention and melted my heart ,may those around her continue to love her and show her she means a lot and I pray for her healing which is being able to speak and walk ,never the less she is a gift from God and such a beauty , she has such great support ,all the best❤❤✨

  • @msflower1661
    @msflower1661 2 роки тому +145

    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!

  • @nancyrahif8442
    @nancyrahif8442 2 роки тому +508

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

    • @Likelyfairy
      @Likelyfairy 2 роки тому +6

      Yes 🥺❤️

    • @tippedjoshua6802
      @tippedjoshua6802 2 роки тому +23

      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 роки тому +3

      She is beautiful. That upset me to.

    • @xythiera7255
      @xythiera7255 2 роки тому +6

      @@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 роки тому

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

  • @RawringReagan
    @RawringReagan 2 роки тому +9

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

  • @kathie1499
    @kathie1499 2 роки тому

    Wow Evely has such a Helpful. Loving, Caring, Very Protective older Sister. It’s Beautiful to see such Sisterly Love & Bond. Much ❤️

  • @ScpPeter2
    @ScpPeter2 3 роки тому +285

    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 роки тому +11

      Sure what? What does that even mean

    • @dawnriddler
      @dawnriddler 2 роки тому +6

      @@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 роки тому +13

      @@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 роки тому +12

      @@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.

  • @Raven74408
    @Raven74408 2 роки тому +59

    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.

  • @valenciaroye6080
    @valenciaroye6080 2 роки тому +5

    ❤️❤️❤️❤️❤️ I love how she is explaining her daughter diagnosis just everything my daughter has special needs and the list is long appointments but I wouldn’t trade nothing I’m happy with my daughter

  • @miikamona
    @miikamona Рік тому +9

    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

  • @cashee5260
    @cashee5260 2 роки тому +100

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

  • @TheShellybaybee
    @TheShellybaybee 2 роки тому +97

    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 ..

  • @scorpioempress63
    @scorpioempress63 9 місяців тому +1

    Such absolutely beautiful mom and babies.. I love seeing Evily feeling the music and connecting to the interviewer through it. ❤❤❤❤

  • @adnilem7070
    @adnilem7070 11 місяців тому +3

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