Living in a Body that's Melting (A Rare Connective Tissue Disorder)

Kayley is diagnosed with a rare connective tissue disorder known as Loeys-Dietz syndrome. This impacts every part of her body including the internal organs. People with Loeys-Dietz have a life expectancy of around 37 years old, and Kayley is a young adult in college. She has learned that it is okay to grieve a potentially shortened life, but Kayley is also dedicated to making the most of however many years she has on this earth.
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Пікірлер: 1 000

  • @SpecialBooksbySpecialKids
    @SpecialBooksbySpecialKidsАй бұрын

    You can check out Kayley's music on SoundCloud at linktr.ee/kayyleyy

  • @portisslave

    @portisslave

    Ай бұрын

    it's so beautiful!

  • @katherineknapp4370

    @katherineknapp4370

    Ай бұрын

    😊

  • @jacquelinturner2201

    @jacquelinturner2201

    Ай бұрын

    the emotion that pours out in her voice!! / her music is so special - her art is made of pure love.

  • @yuem00n

    @yuem00n

    Ай бұрын

    You are light. ⏳

  • @robinames60

    @robinames60

    Ай бұрын

    Her voice is absolutely angelic 👼

  • @yolorwatson
    @yolorwatsonАй бұрын

    Hi! I'm a 31 year old woman with Loeys-Dietz Syndrome! I consider every one with LDS as a member of my family. I love all of you so much. You're so damn strong.

  • @MountainJohn

    @MountainJohn

    Ай бұрын

    does it ever get annoying clarifying you're not a latter day saints?

  • @malinia.20

    @malinia.20

    Ай бұрын

    @@MountainJohn Came here to say this same thing lol!!

  • @Moonbunny55

    @Moonbunny55

    Ай бұрын

    @@MountainJohn😂

  • @AI_MEME_CORP

    @AI_MEME_CORP

    Ай бұрын

    Why does she eyes so very far apart? How come she?

  • @SobrietyandSolace

    @SobrietyandSolace

    Ай бұрын

    Out of curiosity Were you ever initially diagnosed with EDS or another CTD? Also is it a TGFBR2 mutation you have?

  • @frank6048
    @frank6048Ай бұрын

    Even if she doesn't feel like it, I genuinely think she looks beautiful. It's so sad that someone who loves so much has to go through something like this

  • @SobrietyandSolace

    @SobrietyandSolace

    Ай бұрын

    She’s absolutely adorable

  • @kerbalsomething2673

    @kerbalsomething2673

    Ай бұрын

    The universe had to nerf the good people somehow

  • @Elaria5275

    @Elaria5275

    Ай бұрын

    She is! Uniquely beautiful. I honestly feel like she could model

  • @nez1971

    @nez1971

    Ай бұрын

    She has big beautiful eyes!

  • @Wingedmagician

    @Wingedmagician

    Ай бұрын

    I think shes pretty 🤷‍♂️

  • @EStramel09
    @EStramel09Ай бұрын

    I honestly really loved when she said “I will do everything in my power to live the life that I chose to live”.

  • @dreamerqueennotunderthemachine

    @dreamerqueennotunderthemachine

    11 күн бұрын

    I have Ehlers-Danlos and I resonate heavily with what she said there

  • @mrsjamessmom9044
    @mrsjamessmom9044Ай бұрын

    This is such a cruel disease. We had a differential diagnosis of LD for our daughter but it turned out to be Ehlers Danlos Syndrome vascular. She made it to 30. Melting is exactly how I described her illness as well. We did the same thing....lived every day with purpose so not a minute was wasted. It's been 8 yrs and the loss is horrible, but not as awful as her pain and suffering was. Sweet child, sending you a mother's love who really does understand what you are up against. (gentle hug)

  • @erinaa9486

    @erinaa9486

    Ай бұрын

    I'm sorry for your loss 😢❤

  • @mrsjamessmom9044

    @mrsjamessmom9044

    Ай бұрын

    @@erinaa9486 Thank you for your kind reply.❤‍🩹

  • @lindsayschmidt2177

    @lindsayschmidt2177

    29 күн бұрын

    I’m so sorry for your loss. May her memory be a blessing.

  • @zorubark

    @zorubark

    20 күн бұрын

    It sounds like you gave her a wonderful life, and that she made you have a wonderful life too

  • @anntunaley9974

    @anntunaley9974

    17 күн бұрын

    I’m so sorry for the loss of your daughter. I have hyper mobile Ehlers Danlos Syndrome. Vascular is so much worse.

  • @nautilus956
    @nautilus956Ай бұрын

    I have Ehlers Danlos Syndrome, basically a sister disease to hers. Turning 40 next month I worry about the future. Bless her heart, she’s so positive. ❤️

  • @summersalix

    @summersalix

    Ай бұрын

    Hey there fellow zebra! I have eds too and just turned 38. I also worry abt the future. Weight lifting has been a lifesaver for me. My eds affects my digestive organs, hormones, and bones mostly.

  • @malanamarie5206

    @malanamarie5206

    Ай бұрын

    Same but I’m turning 20 next month and I was born with clubfoot too.

  • @nautilus956

    @nautilus956

    Ай бұрын

    @@summersalix Nice to meet you! My digestive system is very affected. Subluxation of my hips and ankles, it’s a very invisible disease. You’re right though, staying active helps. I need to be more active. My skin though, that’s probably the most visible sign. I bruise very easily and my skin is very soft and stretchy.

  • @nautilus956

    @nautilus956

    Ай бұрын

    @@malanamarie5206 do you know what type you have? I haven’t had the genetic testing done but when I was diagnosed there were three types. Now there are over a dozen! It’s crazy how undiagnosed these diseases are. Even the most mild diagnosis could help someone out with life care decisions. I hope you’re well.

  • @summersalix

    @summersalix

    Ай бұрын

    @@nautilus956 nice to meet u too!I'm so sorry u are going thru so much! The subluxations u mentioned can be very debilitating indeed! Kudos for wanting to be more active! You got this! 💪 The gi system is definitely a daily/hourly issue for me and I'm sorry it's given u such troubles too! I had to have my colon removed a few years ago due to organ prolapses (which started in grade school), obstructions, and nerves not working, basically making it impossible for me to go to the BR. I have an ileostomy now, but that caused struggles w stoma prolapses, hernias, my small intestine twisting and telescoping, and blockages. In the last 2 years, I've been hospitalized for prolapses and obstructions 7 times. I have to be very mindful of fiber and what I eat/drink, but even then, complications can occur. Ugh, I miss salads but not worth the pain and potential ER visit lol. I hope u are hanging in there! 🤗

  • @oduneyeman
    @oduneyemanАй бұрын

    My heart goes out to this girl. I hope she gets the love and respect she deserves in life.

  • @user-bg2md4dv8w

    @user-bg2md4dv8w

    Ай бұрын

    I bet her average experience in life is compassion and love from most ppl.. compare that to the average person who gets wrecked with the harsh cold nature of humanity.. god evens things out. I would say she has a radically higher chance of going to heaven, a deeper more meaningful existence and feels radically more love and acceptance than the average person. And that’s good, but what does it say about the way we treat the average human being?

  • @FinalB055

    @FinalB055

    Ай бұрын

    You did just that the best way a stranger can, by leaving a positive comment and taking the time to empathize 🙏🏾💪🏾❤️

  • @suu1998

    @suu1998

    Ай бұрын

    ​@@user-bg2md4dv8w you sound naive. A lot of people with disabilities experience a lot of abuse

  • @Ro-cp8uf

    @Ro-cp8uf

    Ай бұрын

    @@user-bg2md4dv8w go out side bud.

  • @mascottie

    @mascottie

    Ай бұрын

    Me too

  • @Punkiesmom04
    @Punkiesmom04Ай бұрын

    She is such an empathetic, bright, and intuitive young lady and she has impeccable communication skills.

  • @doriamalonso171

    @doriamalonso171

    Ай бұрын

    And her friend too. They are both very profound and kind young ladies.

  • @k.k.2157
    @k.k.2157Ай бұрын

    It ended way too soon. Kayley is such a profound sweet soul with the cutest smile. It was a pleasure listening to her, she’s wise beyond her years. May she live up to 100 and may she keep making art and enjoy the world because the world needs her!

  • @chreen955

    @chreen955

    Ай бұрын

    SBSK doesn't do update videos but they absolutely should.

  • @Axsomaniac

    @Axsomaniac

    Ай бұрын

    @@chreen955 yes they do? they also do updates on their community page as well on youtube. there are a couple of videos which are update videos towards a person!

  • @Fnanaanf

    @Fnanaanf

    Ай бұрын

    @@chreen955they have done a few updates before!

  • @kathrynzeigler9502

    @kathrynzeigler9502

    Ай бұрын

    Occasionally I have seen updates a few years later.​@@chreen955

  • @freyamariano106

    @freyamariano106

    Ай бұрын

    Such an awesome girl!

  • @killmoreturtles
    @killmoreturtlesАй бұрын

    She is very good at expressing her thoughts ; that's awesome!

  • @polarvortex6601

    @polarvortex6601

    Ай бұрын

    yeah he's pretty intelligent lady, her speech and thought expressions are amazing. i concur

  • @crazycandi
    @crazycandiАй бұрын

    "I have the body of like a 75 year old"- I completely relate! Somebody like me! I would totally be her friend! I was tested for Loeys-Dietz syndrome because I have a lot of similar symptoms. Mine turned out to be Ehlers-Danlos syndrome (which is a different connective tissue disorder). It's so hard to have an illness like this because people will think it only affects certain parts of your life, but connective tissue is EVERYWHERE in our bodies and any connective tissue disorder affects every part of your body. It also often comes with many comorbid disorders. Also, seeing your friends with your disorder pass away is so freaking scary and I'm glad she's talking about it. 💙

  • @nicolemariemusic

    @nicolemariemusic

    Ай бұрын

    I have ehlers danlos syndrome too love meeting other with it too.

  • @LeGarsQuiSaitPas

    @LeGarsQuiSaitPas

    Ай бұрын

    I hope you get to know each other and become besties ❤ Have a great day 😊

  • @jivalucia3916

    @jivalucia3916

    Ай бұрын

    I have Ehlers- Danlos syndrome too and I often have to educate people because they don't understand that connective tissue is 100% everywhere! I also feel that my body is "melting" from the inside out....which it is according to doctors. Wishing everyone with rare connective hereditary diseases gets the chance for a better life because we as a group are extremely misunderstood.

  • @laurascruggs4135

    @laurascruggs4135

    Ай бұрын

    I also have ehlers danlos

  • @Moonbunny55

    @Moonbunny55

    Ай бұрын

    @@laurascruggs4135 Me too😊

  • @obnoxiousbluebird6634
    @obnoxiousbluebird6634Ай бұрын

    She SEES the world, she doesn't just look at the world, and amble through it. She appreciates and values what she has. What an inspiring person.

  • @mklschwrtz2
    @mklschwrtz2Ай бұрын

    I'm turning 33 in a few months and I was diagnosed with LDS when I was 18. A bunch of surgeries, a mechanical heart valve, brain aneurysm and whatnot but still going strong. Kayley is a real inspiration and should be for everyone else aswell!

  • @joeygirl_
    @joeygirl_Ай бұрын

    She is so adorable. Her laugh. Her humor. She’s so wise… ❤

  • @electronicbagel4539
    @electronicbagel4539Ай бұрын

    Thank you so much for this interview. My husband and his side of the family all have Loeys-Dietz Syndrome Type 3. We always thought of reaching out to do an interview to spread awareness for this condition. Thank you Kayley for being brave and opening up

  • @MLWeegee

    @MLWeegee

    Ай бұрын

    ❤❤❤❤❤❤❤

  • @berf9445
    @berf9445Ай бұрын

    This made me cry. She is such a beautiful person and deserves... she deserves to not have a ticking clock counting down her life. I hope she has wonderful experiences.

  • @visionvixxen

    @visionvixxen

    Ай бұрын

    I feel the same like this just SHOULDN’T be. 🙏🙏🙏

  • @Prettymapleleaf

    @Prettymapleleaf

    Ай бұрын

    We all have that ticking clock. Your comment is beautiful. :)

  • @user-vq6mx9ko7q

    @user-vq6mx9ko7q

    13 күн бұрын

    @@Prettymapleleafonly if we allow ourselves to think that way:-) The universe is all mental.

  • @7272goldy

    @7272goldy

    2 күн бұрын

    ❤❤❤❤❤❤❤❤❤

  • @NeighborhoodOfBlue
    @NeighborhoodOfBlueАй бұрын

    Hello Kayley! My daughter and I have a condition which is cousin to yours, Ehlers-Danlos syndrome, and my partner has another one, Marfan Syndrome. We're grateful to you for having the courage to speak about connective tissue disorders and bring awareness, and am sorry for how much this impacts your life.

  • @Brainalicious
    @BrainaliciousАй бұрын

    16:43 this about anticipatory grief really struck me because my husband and I are going through this at 57. We both have issues that affect mobility, so have had to come to terms with missing out on travel and experiences we always wanted. It's hard. ❤

  • @zoeitis
    @zoeitisАй бұрын

    wow, she's amazing. she is playing GUITAR! i taught myself 5 years ago. not only is it painful for healthy people at times, it's also so good for her hand muscles. what a testimony to her resilience. she's so articulate and emotionally intelligent. go dark humor!❤

  • @everything_i_think2291
    @everything_i_think2291Ай бұрын

    What an amazing clarity. I am 2 years into a formidable auto-immune disorder and this lady is such an inspiration for me to accept my predicament. Thank you.

  • @stoicstrawberries

    @stoicstrawberries

    Ай бұрын

    love ur icon !

  • @TheRancidPenguin

    @TheRancidPenguin

    Ай бұрын

    I went through something similar for the last 7 years and got so desperate I started trying diets recommended by what I thought were 'crazy' people. First I tried cutting sugar and only eating while foods, then AIP and instantly saw a gigantic improvement but not full remission. Then I tried the carnivore/lion diet and I'm finally in remission! I'd definitely recommend at least looking into it both on here and and available subreddit or forum for your particular disease but ultimately autoimmune diseases are all triggered by the and thing - inflammation. Best of luck!

  • @hopeadler507

    @hopeadler507

    Ай бұрын

    @@TheRancidPenguin🙄🙄🙄🙄🙄

  • @TheBaconStrip
    @TheBaconStripАй бұрын

    She is so beautiful! Her view of her world is beautiful. Her perspective humbles me and her humor is wonderful.

  • @Joey-rs7uq
    @Joey-rs7uqАй бұрын

    So beautiful, intelligent, emotionally mature, humorous and can cook, she is so awesome! I love her empathy and perspectives on life, deep, grounded and present.

  • @annayang1667
    @annayang1667Ай бұрын

    This young lady has the most incredible heart I've ever seen. We could all learn from her, including myself.

  • @epicleaf
    @epicleafАй бұрын

    Her outlook on life is so true, this honestly helps me a lot right now

  • @jujulachlan11

    @jujulachlan11

    Ай бұрын

    I feel the same, she’s literally so beautiful inside and out

  • @julielarson9850
    @julielarson9850Ай бұрын

    This girl is so amazing. Not only is she incredibly beautiful, she seems like such an awesome person and friend. I pray she lives a long and happy life.

  • @brynnaallen3441

    @brynnaallen3441

    Ай бұрын

    I was looking for this comment 🥰 I honestly think she is so beautiful!

  • @adararelgnel2695

    @adararelgnel2695

    28 күн бұрын

    She is pretty, but "incredibly beautiful" is a stretch... unless you're referring to her character?

  • @spring5577
    @spring5577Ай бұрын

    shes such a sweetheart. i love this series, its so nice someone takes their time and talks to these lovely people, it warms my heart. keep it up❤❤❤

  • @ShockerzGaming

    @ShockerzGaming

    Ай бұрын

    True, but you ain't watched all of video ❤

  • @spring5577

    @spring5577

    Ай бұрын

    ​@@ShockerzGaming im watching it right now :))

  • @ShockerzGaming

    @ShockerzGaming

    Ай бұрын

    ​@@spring5577good ❤

  • @juliansearcie1758

    @juliansearcie1758

    Ай бұрын

    Amen gods children are awesome 🙏🙏🙏🙏

  • @haleypirio921

    @haleypirio921

    Ай бұрын

    It's so nice that these people take their time to talk to Chris so that us random people can learn more.

  • @shelbycoffey7441
    @shelbycoffey7441Ай бұрын

    She is so sweet and well spoken. I have never heard of this disorder that was so kind of her to share so much and educate everyone. I hope she gets so much love and joy out of life!!

  • @selenemeow81
    @selenemeow81Ай бұрын

    You have a great personality, my youngest son has MLD, metachromatic leukodystophy and they say they live until maybe 30, he's going to be 18 and its 8n the back of my mind but I'm letting him achieve all he can, there is nothing you and he can't achieve. He is graduating this month with the Merritt of distinction and 3 certifications. Do well in college, I am praying 🙏 for everyone who has any disorders. God bless everyone.

  • @reinab8168

    @reinab8168

    Ай бұрын

    I'm praying for your family right now.❤

  • @visionvixxen

    @visionvixxen

    Ай бұрын

    Praying for your family …. 🙏

  • @orcashadow8989
    @orcashadow8989Ай бұрын

    She is so wise for her age, I really admire her.

  • @Virlandrya
    @VirlandryaАй бұрын

    Kayley is just the sweetest.

  • @malanamarie5206
    @malanamarie5206Ай бұрын

    I also have a connective tissue disorder a lot of people don’t realize that if you have a connective tissue disorder, it is more likely than not that you will have a bunch of other disorders as well caused by the wacky collagen. I had clubfoot when i was born and had to have surgery and now my feet are the only thing on my body that doesn’t bend too much they actually barely move. Luckily I have a mild connective tissue disorder.

  • @hollycooper7137
    @hollycooper7137Ай бұрын

    My mum got diagnosed with Loeys-Dietz Syndrome and we never heard of anyone with that condition before. She passed away 14 years ago because her mitral valve "melted" and flipped on itself! My little brother has the same mutation of gene but I am grateful that I don't

  • @amandagilliams5306
    @amandagilliams5306Ай бұрын

    What a wondrous human being this young woman is-she has a beautiful spirit, and extraordinary depth and insight. May she stay healthy! 🌼

  • @Asiaisastar
    @AsiaisastarАй бұрын

    She's so sweet 😭

  • @cindys.9688
    @cindys.9688Ай бұрын

    Kayley is such a cutie and so sweet. She has a lot of emotional maturity. She thinks outside of herself and has empathy for others. She has a tremendous attitude and I love hearing her talk about just everything! Gosh, I'm so sorry she's got to deal with this but she's definitely making the most of it. I love her story about starting a new middle school wearing the halo and telling the kids she was in a car accident...instead of the real reason she had to wear it.😊 I thought that was adorable! Most middle schoolers, to be honest, would probably not be so clever and dig into their sense of humor for a response. Gotta respect her for that. A sign that her emotional maturity started young. Gotta give her kudos 👏🏼 for keeping her thoughts together while Mr Chris compassionately listened to her with his beautiful, blue eyes. My thoughts would wander...but she kept it together! What a pro.😁

  • @cats1900
    @cats1900Ай бұрын

    "Jacked up" is my new favorite term.

  • @crunk1

    @crunk1

    Ай бұрын

    I think "jacked up" in terms of "messed up" has been around since the 90s, probably earlier.

  • @cats1900

    @cats1900

    Ай бұрын

    @crunk1 I have never heard it before. I love it!

  • @nessae354

    @nessae354

    Ай бұрын

    ​@@cats1900it's also used to describe really muscular or ripped physique. Like wow he's super jacked up.

  • @jennh2096

    @jennh2096

    Ай бұрын

    Yeah we were definitely saying it as kids in the 90s, I still say it now in my 40s lol

  • @AnonYmous-si5qv

    @AnonYmous-si5qv

    Ай бұрын

    @@nessae354 ''Jacked up'' in a sentence like that is usually used to describe someone on roids, natural people aren't jacked up.

  • @FirstLast-jo8wq
    @FirstLast-jo8wqАй бұрын

    Kayley is such a mature, genuine, good-natured person. It is really wonderful to hear her perspective

  • @AbbyMichal
    @AbbyMichalАй бұрын

    Completely random but she sounds so much like Rory Gilmore. Kayley, you’re so strong and have such a beautiful perspective on life. Thank you for sharing part of your story with us! 💓

  • @balaam_7087
    @balaam_7087Ай бұрын

    You have a wonderful perspective, Kayley, and it was nice to get to meet you so to speak through this video.

  • @Kate-cr1fz
    @Kate-cr1fzАй бұрын

    Kayley is so fluent in describing herself. I bet she is a wonderful song writer.

  • @tandiparent1906

    @tandiparent1906

    Ай бұрын

    ❤ I agree; I think she would be enjoyable to listen to if she read books too.

  • @indesomniac
    @indesomniacАй бұрын

    I also have a connective tissue disorder that I’m still getting assessed for (suspected hEDS), so I really enjoyed this video in particular - being a disabled artist is not an easy path, but it’s a life of passion and love and I’m inspired by the zeal for life shown in this.

  • @portisslave
    @portisslaveАй бұрын

    omg i've seen her singing on tiktok before, i love her so much!! kayley PLS put your music up more, sing more, we wanna hear your beauty!

  • @Von2968
    @Von2968Ай бұрын

    Kayley is a beautiful, intelligent, articulate and positive human. I’m so glad she shares a little of her life with us here. Always learning something new from this channel. Thank you. 🙏🏼 ❤

  • @alittlebitofaverything3289
    @alittlebitofaverything3289Ай бұрын

    I hope she knows that the people who love her would want to share the load of grief with her, instead of it falling all on her. It’s actually one thing I’ve been working on sharing with my family, and I always feel better when I do. She is a beautiful soul who will live a beautiful life!

  • @emmasvisualdiary
    @emmasvisualdiaryАй бұрын

    Kayley seems like such a lovely human being! Her hair so cute too!

  • @meierboy97
    @meierboy97Ай бұрын

    I absolutely love her attitude about this. My disabilities aren't outward showing, but I have the same sense of humor about them. You have to, I've been sick for 10 years and have gotten 4 diseases in 8, and I'm 26. You have to be able to joke about it

  • @chreen955
    @chreen955Ай бұрын

    For a second there I thought she was going to say "people in the wild". To Kayley: You seem like an amazing lady. I had an accident and am going to be having hand therapy soon. If things get tough I'll remember you and be extra strong.

  • @robbieboydudeguy

    @robbieboydudeguy

    16 күн бұрын

    Good luck ❤

  • @chreen955

    @chreen955

    16 күн бұрын

    ​@@robbieboydudeguyThanks.

  • @wowzatrishiebunz
    @wowzatrishiebunzАй бұрын

    I love this young woman. Her spirit is radiating through this video. I wish more people in the world saw things as she does. This is very inspirational.

  • @Trippp550
    @Trippp550Ай бұрын

    That sucks. She is beautiful inside and out. Praying for continued strength and encouragement. “Continued” because she already looks strong and positive. Good for you girl.

  • @finleygray417
    @finleygray417Ай бұрын

    she reminds me SO much of claire wineland, and trust me this is one of the highest compliments i can give 💜you are awesome Kayley! sending love from someone with another connective tissue disorder 🫂

  • @PS-qn4oz

    @PS-qn4oz

    Ай бұрын

    I agree. Oh gosh I'm glad people remember Claire. Can't think of her without tearing up.

  • @margodphd

    @margodphd

    Ай бұрын

    ​@@PS-qn4ozMe too. I think of her often, actually. She really had an impact on so many people and in that way, she's still very much present.

  • @PS-qn4oz

    @PS-qn4oz

    Ай бұрын

    @@margodphd Beautiful thought, absolutely. Love to Claire and Kayley and all of us lifting each other up.

  • @finleygray417

    @finleygray417

    Ай бұрын

    @@PS-qn4oz i’ll never forget her, i think of her often and just cry but also smile because of what a light she was and continues to be. she truly changed my outlook on life as someone with chronic illnesses

  • @PS-qn4oz

    @PS-qn4oz

    Ай бұрын

    @@finleygray417 I'll always remember that video where she said "I'm dying" and took a sip of tea or something and then started laughing. If she can do it, we all can. If she can be that brave with the worst diagnosis, we can be brave with lesser problems, too. Wishing you healing!!

  • @freebee9172
    @freebee9172Ай бұрын

    You are very educated and intelligent and you talk fluently

  • @OKBoomer2k
    @OKBoomer2kАй бұрын

    She's so pretty and well-spoken!

  • @rd400d
    @rd400dАй бұрын

    She is beautiful.

  • @dianagray702

    @dianagray702

    Ай бұрын

    I think so too. I don't think she looks any different then anyone else.

  • @Ullisen
    @UllisenАй бұрын

    Such a beautiful girl with such a beautiful outlook on life. I hate that people bring her down, but I love that she still has so much love for the world. A true inspiration 💜

  • @MsAnthropoLogic
    @MsAnthropoLogicАй бұрын

    Kayley is a wonderful storyteller and her voice is so pleasant to listen that I’d listen to her talking for hours! Good luck girl 🌿

  • @TW-SB
    @TW-SBАй бұрын

    Thanks for these wonderful videos that you make. You bring attention to these people’s problems in a very caring and sensitive way.

  • @Anonymous121212
    @Anonymous12121226 күн бұрын

    What I love about these videos is how it's "human first, syndrome last" and while the inspiring and courageous lines are always welcome, I find the more "mundane" and "ordinary" ones resonant. Here we have: "If I had something to drink [I'll talk about my fears of mortality]." 🤣 "She made a lemon cake before this, and we're going to invite friends over to eat it." "I love nature, love, life and music [laughs] I'm such an artist." "We met on the first week of school and we do everything together. What do we do together? [Both freeze, then laugh]." "We like nature and flowers. We frolic in flowery fields."

  • @amalie.eugenie
    @amalie.eugenieАй бұрын

    I want to hear a song of Kayley The way she speaks already sounds so poetic

  • @KytexEdits
    @KytexEditsАй бұрын

    She seems like a very beautiful person in terms of her personality, outlook, and emotional way of dealing with her situation. Honestly, as someone who's chronically ill, severely, unable to work, but probably will make a partial recovery yet remain ill in the future, I've been feeling very lonely on a romantic/intimate level for a good while, and it's eating me alive. Watching videos of fellow chronically ill people just makes me think "I need to find someone else who UNDERSTANDS ME". When I saw her talking about the back pain, fatigue, health anxiety, it was like she was DESCRIBING ME!!! It's sad but true that people who don't experience these kinds of things long term simply can never know, this obviously doesn't mean I'm gonna just confine myself to people in similar positions to mine, however it does get lonely, but it feels really good to hear that someone else can relate, even though I wish they didn't have to :( Seriously man, if you're reading this Kayley I hope you live a long life, with lots of love in every respect from those you know, and get to achieve your dreams of writing music. You seem like a genuinely super cool person.

  • @degatagauwatie4073
    @degatagauwatie4073Ай бұрын

    It's always striking to me how those that were dealt the worst hand in life seems to love life the most. I hope an effective treatment is found for those with the condition.

  • @TheCohesiveGarage
    @TheCohesiveGarageАй бұрын

    A supreme and beautiful observer! So rare to have these perspectives. We all should fell so lucky to be blessed with this life.

  • @Sco6014
    @Sco6014Ай бұрын

    I love her outlook and philosophy about enjoying every part of life. What a blessing this interview is

  • @derek6460
    @derek6460Ай бұрын

    I love her positivity and optimism...seems like an awesome person!

  • @logixindie
    @logixindieАй бұрын

    She has big love for the nature, that's awesome.

  • @TheAngryBert
    @TheAngryBertАй бұрын

    There is so much more wisdom in this young lady than in a lot people of my age. Including me. Much love from Bavaria!

  • @lindabinkley4396
    @lindabinkley4396Ай бұрын

    I loved hearing Kayley; she is a delightfully sweet young lady. She spoke very eloquently and seemed to be well educated. This proves she does not let her health issues keeping her from living life. May the Lord bless her and her doctors in their quest to help Kayley.

  • @laurentcop9631
    @laurentcop9631Ай бұрын

    Your channel is fantastic ! I am so sorry for this kids😢. But your channel open a window us to them and hopefully them to us 🙏

  • @sophie1564
    @sophie1564Ай бұрын

    What a kind and bubbly person Kayley is! I really admire her strength. I wish her all the happiness in the world and really do hope she is always surrounded by beautiful friends 💛😊

  • @cryptidian3530
    @cryptidian3530Ай бұрын

    I often wish I could snap my fingers and heal people. It gives me chest pains that I can't. :( She's too pure.

  • @visionvixxen

    @visionvixxen

    Ай бұрын

    I wish we could all pray for a miracle. If anything, she deserves more than one!

  • @rachellightsey5843

    @rachellightsey5843

    Ай бұрын

    We wish you could snap your fingers and heal us too. My mom just doesn't understand how much pain I go through. I dont know what it is like to be pain-free without medication, and even on the medication, I still feel pain. My mother does love me very much, but sometimes I get pushed too hard to do things

  • @kimberlysmith7311
    @kimberlysmith7311Ай бұрын

    ❤ she is so very beautiful and such a wonderful inspiration. Hearing her experience, strength, and hope was most lovely part of my day. ( recovering from lumpectomy and radiation today) ❤😂

  • @kathymay3980
    @kathymay3980Ай бұрын

    What a wonderful intelligent young woman. She’s battling awful odds but still is a positive thinker. That’s what will keep her going. God Bless you. ♥️👏

  • @lovingmayberry307
    @lovingmayberry307Ай бұрын

    What an inspirational young woman you are, Kayley! I loved meeting you through this video. I wish you all the best! 🫶💜

  • @malovela
    @malovelaАй бұрын

    I feel like listening to her and looking at her more. There's just something about her. She's so well spoken and charming and likeable, and she has this special... I don't know, presence? And that pretty smile and contagious laughter, too. She's someone you could easily fall in love with. And how great it is that she did this interview, so people can learn about the syndrome. Kudos to her.

  • @Cudlla
    @CudllaАй бұрын

    Kayley, I admire your capability to express your thoughts and your emotional inteligence... Thank you and SBSK for sharing another beautiful story with the world! I am also happy that the comment section is opened again... :D

  • @annanas4760
    @annanas4760Ай бұрын

    I've EDS, a collagen disease but it's not so terrible as her loeys dietz syndrome This girl is so mature, courageous and loving She's AMAZING 🥰 she accepts that her body doesn't want to follow her aspirations and her dreams she accepts things like they are She wants to live the best life, the syndrome will let her live.... Lessons for all of us 👍✨ Bravo 👏 We are with you Beautiful Girl 🌹

  • @briannasteele6074

    @briannasteele6074

    Ай бұрын

    I agree, unless it’s the vascular EDS.

  • @annanas4760

    @annanas4760

    7 күн бұрын

    Very true

  • @karenfitzpatrick6256
    @karenfitzpatrick6256Ай бұрын

    Kayley looks different. Yes. And she looks beautiful! I absolutely love her passion for life. Respect and hugs from Vermont ❤

  • @hiraeth93
    @hiraeth93Ай бұрын

    Honestly, I think she looks really good. I like the way she communicates and how positive she actually is. She is very strong and we all need to learn a lot from her. Best whishes from Spain ❤

  • @dawn2755
    @dawn2755Ай бұрын

    Such a beautiful interview! What a fabulous outlook on life! Well done on the interview.

  • @pragmaticcat7619
    @pragmaticcat7619Ай бұрын

    What a wonderful additude she has! She's a very strong young lady.

  • @lindajones9089
    @lindajones9089Ай бұрын

    What a lovely intelligent young lady. Inspiring !

  • @Jessica-ih9xd
    @Jessica-ih9xdАй бұрын

    Kayley you have beautiful soft features; a very pretty girl with emotional intelligence and insight. This was so educational to me. ❤ thank you for inspiring and I hope you two keep frolicking!

  • @beuzzzi

    @beuzzzi

    Ай бұрын

    she's looks like a fairy 🧚🏻‍♂️ I also love her thoughts about life

  • @ShockerzGaming
    @ShockerzGamingАй бұрын

    ❤ Much love kayley! ❤

  • @AnaEmaS
    @AnaEmaSАй бұрын

    She is so well spoken and intelligent, but also Chris is such an incredible interviewer; asks the questions we might want to know about the disorder but also makes sure to ask questions that are very human so all of us can see that they are people just like us.

  • @angeladenmark3164
    @angeladenmark3164Ай бұрын

    Awesome Video!!! Kayley has a beautiful outlook on life!!! I was shocked when she told what college she attended!!! My Granddaughter recieved a full scholarship to go to Belmont!!!! It is a great college for Music!!! Thanks for sharing!!! God Bless!!!

  • @shoshannafachima1306
    @shoshannafachima1306Ай бұрын

    Kayley is a beautiful soul and her love of music,art,nature and life is wonderful.i hope and pray that she can realise her dreams❤❤

  • @smvfc
    @smvfcАй бұрын

    I’m just over a minute into this video, but all I needed was the first sentence or two to LOVE her. That kind of positivity is SO rare and admirable (I am generally much more on the negative side). And then just her quipping like “Im SO in love with life, like I’m so dramatic”. Loooool YES. I’m gonna keep watching but I absolutely need this lady in my life! What a friend she’d be She also has a really cute, casual style. ❤

  • @c-LAW
    @c-LAWАй бұрын

    What a wonderful young lady! Is be proud to be her parent and honored to be her friend.

  • @grimx00
    @grimx00Ай бұрын

    I can't believe someone said that to you, you're so cute and your outlook on life is beautiful ❤ Edit: i checked out your music and wow your voice is beautiful 😭 good luck with future work!

  • @dk237
    @dk237Ай бұрын

    Kayley is so beautiful with such a sweet soul. Her blue eyes are gorgeous.❤ Edit: just listened to her song Not a Reason.. she has such a beautiful voice. I really loved the song!!

  • @bobcreature2127
    @bobcreature2127Ай бұрын

    Have watched a ton of your videos, this is by far my favorite. She is incredibly deliberate in her speech and your questions were great.

  • @Amber24426
    @Amber24426Ай бұрын

    You seem so awesome Kayley. I’m almost in tears listening to you speak with so much beauty and truth. You’ve really done an amazing job here at capturing how to move through the world with resilience yet softness simultaneously. As someone a few years older than you who has been very depressed for a long time, just know your words have resonated with me and make me want to look at my life from a different lens. Thank you for sharing your story and your wisdom with us 🩷

  • @SoliRhymesWithJulie
    @SoliRhymesWithJulieАй бұрын

    I so appreciate hearing your story, Kayley.

  • @lizebotha8783
    @lizebotha8783Ай бұрын

    I wish her all the best! ❤

  • @fekmmoso
    @fekmmosoАй бұрын

    I think sharing our stories is so helpful. I am struggling emotionally right now and hearing the positive messages from a person who has overcome so much is very uplifting. Thank you for sharing Kayley ❤

  • @Glimflicker
    @GlimflickerАй бұрын

    Your compassion, understanding, and simply listening in these videos has really helped soften a lot of hard edges I used to have. These days I find myself yearning to be empathetic and understanding in all of my interactions with my family, friends, and random passers by. Thank you so much for inspiring change in me.

  • @tassianatome6964
    @tassianatome6964Ай бұрын

    Kayley you are a beautiful luminous being. Listening to you was very inspiring.

  • @danielcarter491
    @danielcarter491Ай бұрын

    All I want to say is that I clicked on this video because you look adorable. And now having watched the video, I think you are even more adorable. You have such a wonderful way with words. Your philosophies about life and people and your unbelievably graceful demeanor are truly endearing. You must have so many people who adore you - maybe whether you know it or not.

  • @erinaa9486

    @erinaa9486

    Ай бұрын

    Same! I saw her picture and thought, she's so pretty! What a great picture of her!

  • @ConnieKelsey
    @ConnieKelsey9 күн бұрын

    Thank you Kayley for teaching me about Anticipatory Grief. My adult daughter has Parkingson's and I am 74. You give me courage.

  • @jacquelinturner2201
    @jacquelinturner2201Ай бұрын

    what a beautiful human being 💗 she just seems like a super lovely, genuine person and i’d love to have a friend like her in my life.

  • @blairariavanderkamp3405
    @blairariavanderkamp3405Ай бұрын

    " In love with the world " how cute! I wonder how old she is. I was very disappointed by the ending though. I feel like she wasn't finished talking and there were no closing questions or comments. 😕