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

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.

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

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. ❤️

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)

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

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

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

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!

"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. 💙

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

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.

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!

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

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.

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

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.

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. ❤

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.

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.

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!❤

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

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

"Jacked up" is my new favorite term.

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

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.

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

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.

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!!

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❤❤❤

She's so sweet 😭

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

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

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.

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! 💓

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

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.😁

Kayley is just the sweetest.

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

She's so pretty and well-spoken!

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

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.

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

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!

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. 🙏🏼 ❤

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!

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

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.

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.

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 🫂

You are very educated and intelligent and you talk fluently

She is beautiful.

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."

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

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 💜

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

Kayley has a very positive attitude about life and I'm sure would be a wonderful friend...

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 🌿

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.

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

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.

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.

❤ 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) ❤😂

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

What a lovely intelligent young lady. Inspiring !

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 🙏

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

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

❤ Much love kayley! ❤

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

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

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.

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. ♥️👏

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

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 ❤

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 💛😊

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!

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

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

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!!!

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 🌹

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

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.

I think she’s beautiful. True beauty shines from the inside out. Great outlook and grounded.

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

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

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

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

I wish her all the best! ❤

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❤❤

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!!

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.

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!

I so appreciate hearing your story, Kayley.

Wow 9:31 Chris ❤ this is tough... I'm so sorry for your loss angel 👼🏼 I'm glad Chris knows how to navigate This ❤

She’s so beautiful inside and out! Such a kind beautiful soul

Your compassion is as beautiful as you are. I thinknk you're gorgeous.

I'm astounded by this young woman's strength, intelligence and maturity! Amazing!

I could watch her all day. She’s a total vibe.

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.