Living with Williams and Rett Syndromes (The Only Known Person with Both)
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- Опубликовано: 26 сен 2024
- Lilliana is the only known person to ever be diagnosed with both Williams and Rett syndromes. She was developing typically for a person with Williams syndrome until her regression started at three years old. Lilli then lost many of the skills she once mastered. She expresses through her communication device that it is “frustrating” to no longer be able to communicate as she once could. Lilliana and her family are now trying their best to navigate a situation with no blueprint.
Follow Lilliana's family at / lillianaboczar
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When she said frustrated with the eye gaze... Broke my heart. She looks like she has so much to say and she just can't get it out. I can't even imagine how frustrated she must always feel.
Yes, even before it was mentioned I could even tell that she was trying to speak. She looked very focused and was making slight noises. I'm not sure of what she wanted to say but I'm sitting here rooting for her to be able to get it out. It really breaks my heart 🥺🥺
@@Britttanyy for real poor little baby 😿😿 it’s like i want us to go in her mind and make sure she knows that we understand what she’s trying to say
@Ichigo excuse me?
Rett syndrome literally takes away previous verbal communication skills over time
I am even getting frustrated I want to know what she is saying
I admire the honesty of these parents. Sometimes people put on the facade of coping perfectly with their child’s issues. It’s tough. More than most of us could handle. Thank you, Mom & Dad for not pretending. It makes us all feel better about our challenges.
Totally agree! Went to the comments to say this!
Agree.. Life everywhere is almost the same.. Everybody struggles. I hope realising this people can be kinder to each other.
I agree with everything exept the last sentence. I don't really understand how someone's struggle can make you feel better about your own. I can relate to others struggles and sympathize with them. But I've never once felt better about myself when I see someone else struggling. Im not saying this to be a jerk. Just don't want her to read the comment and think everyone feels that way as you stated.
Definitely. And I'm glad they're able to be honest because keeping all the pain in hurts you and your loved ones way more in the end.
@@lc4life369 I believe she meant it in a good way like a solidarity.
Knowing in this world you are not alone. There is someone there struggling and still make it and that's part on how you learn to deal, accept, face, acknowledge the fact that life is hard and indeed a struggle.
It doesn't necessarily mean that "I feel happy seeing someone else struggle"
Instead it's a metaphor to say that "I'm happy I'm not alone" in this tough world.
It's basically the same concept as when motivators trying to knock on some common sense onto you about how everybody struggles by listing all the hardships of most successful people bfr they reach their peak.
I like how the Mother is so truthful about her feelings instead of saying things she thinks she should say..speaking about myself if I were in her shoes..
I know, right? It frustrates me to see people who are struggling say, not how it is, but what is socially accepted.
I'm frustrated for her as well. I can see her thinking and wanting to be able to communicate but not being able to. That has to be very emotional and difficult to live with.
The way she holds constant gaze on her dad when you ask her what her father hopes for her. Not only does this signify (in my opinion) she understands the question, but also, that she truly wants to know her father’s answer. His answer is beautiful. I hope it’s what she needed to hear. Thank you, for continuing to do what you do. Both SBSK and these incredible people.
The hope will be realized when Christ Jesus returns and all things are made "new" she will be able to talk to her dad and run and play with her dad and I think any other boy is gonna have to wait for quite a few years before dad will ever let anyone get between them.
I have to say, I appreciate her dads honesty. I can’t imagine how hard that was on the beginning. What a beautiful family! Her mom seems like such an amazing person. ❤️
I agree!
Yeah. I had a brother in a similar situation as Lliana. Losing hope in all but just being alive is worth every tear. It is as utterly selfless as possible. All your energy as a family goes into the disability, and in the end, the disability defined every moment of all of our lives. People used to say me, "He had a disability, but it doesn't define him." It was kind, but in the end it wasn't true. Everything we did, every day was prescribed by, defined by his disability.
This mom and dad will need frequent dates to fill their breaking hearts. I hope mom allows us helpers in.
@@jenniferellsworth1226 I appreciated the honesty too. I'm so sorry your family was defined and constrained by your brother's disability. These disabilities aren't gifts; they are tragic burdens.
I appreciate what he said he hopes for her. It's a very lovely and also attainable thing to want for a person
Both her parents are awesome, they love that little girl so much.
Chris comes in with that loving energy and everybody falls in love with him🙂. God bless you Chris and Alyssa, I'm always trying to be a better person, and these videos are teaching me so much.
I know nobody says it anymore, but can I just say ditto? I love these videos!
I wish Chris could meet my son, he has Williams Syndrome. Chris seems like such a caring soul, kids can't help but love him.
He is so cool
By the glory of the good Lord Satan
I love how when you asked "do you love your mom", Lilli scoffed like she was saying "well duh, of course!"
😍
its so refreshing to hear someone say that life is hard when you have a child with differences. most just say how amazing it it (of course its amazing) but the reality is that it comes with so many other feelings. sometimes we need to hear others say thing can be difficult so we don't feel like we are failing by not being happy all the time.
I agree, hard is a real thing, neuro typical child are hard too, I’m sure not as hard but, like u said it’s ok to say it hard ♥️
i believe it’s called “toxic positivity” we all need to accept negative emotions (frustration, anger, sadness) to cope with life.
I have 2 special needs kids out of 5, they do make us stronger but we wouldn't trade them for anything.
@@janellcrews6108 i would never trade mine but its healthy to say that sometimes it is hard. it not usually the kids that make it hard but the systems that let you down so often that your stress levels stop you enjoying them and their quirks so much.
@@souixaan very true we also have teachers acting like you aren't doing enough, I get treated like that sometimes. I'm not a helicopter parent but I let them experience life like I do with the others. Some people act like if I take a shower for 5 minutes that's 5 minutes away from my kids.... I don't know how to explain but those are my examples.
The mom is the most honest parent interview I’ve seen. Caregiving is so hard, and I appreciate her vulnerability I also appreciate you showing a parent who is struggling. ❤
She reminds me of my mom. Last night at like midnight I used the toilet next to my bed and I stood up and I couldn't turn around. My mom just picked me up and put me in bed. I feel horrible. I feel like a baby. It's extremely depressing. The worst part is I can see how tired my mom gets. I just can't help it
My son is 24 now but I can still remember those early years with so many appointments and therapists. I wish I had of had mental support because it takes its toll. You're doing GREAT mom and dad
Beautiful honesty. Not easy. Help people out when you can, never know what people are going through.
This was so informative and Lilli is such an interesting person. I can see her intelligence through her eyes. She's so expressive. I even sense some attitude which I think is amazing! And to her sweet parents, you're both doing a great job of just meeting her where she's at and loving her well. It's easy to tell that she feels loved and cared for.
I totally felt a silly attitude side! She seems witty even! Also her little giggles were so adorable!
Great kid, great attitude.
Rhett’s: the symptoms of Parkinson’s, cerebral palsy, and epilepsy rolled into one. That’s a lot to deal with so young.
Certainly, and the William's Syndrome makes people super friendly, enthusiastic and extroverted. She is struggling with a lot.
you forgot symptoms of autism too
@@em-dy3hn and also makes them
intellectually disabled
I would say it's like a horrible mix between autism, CP and epilepsy.
@@PIB2000 Why would you say autism is in the mix?
One of the greatest gifts from these interviews is learning there are many different ways to communicate. The most important is love. You don't need to say anything to feel and know that. What a cutie! You can tell she likes her new bud.😊
I absolutely love how at 20:10 ish when her mom says she has the most amazing giggle she actually started to giggle! It shows how much she comprehends and understands. With that said, she must feel so loved by her parents. I know it is not easy for them but they are so loving and wonderful parents!
Oh my goodness.. I wanted to cry when her mom knew to the day the last time she said a word other then “mom”. The honesty in this interview is amazing, it’s great to hear all the positives in others but this one has a rawness and realness to it that I’ll remember longer.
She has so much expression in her eyes and some of her movements 🥺 it feels like she wants to say many things but just can't. I didn't know about these syndromes, i'm glad to know Liliana's story now. I hope they can find a cure or something to help her, or people living the same thing, in the future 💕
"If she can do it, you know what? Do it."
Thank you, Dad, for putting your own issues aside, putting yourself in your daughter's shoes for a moment and letting her just be herself. ❤️ That is profound. & to Mom, it broke my heart when you said that unless you remember to play dress up with her, she misses out. You do SO much for your beautiful daughter and it's okay if you forget to play dress up sometimes. She loves you & knows you are doing your best, because you are! All of the love to all of you! ❤️
I love how real these parents are. I just wanna give them both a big hug, you can see how hard this is for them, but they are clearly the best parents. 💜
I agree so much!
Thank you for featuring Lily. I feel like Rett syndrome is misunderstood by the public. There are so many great tools to help kids/adults communicate. Lily you are awesome.
If I may ask: what do mean by saying that Rett-syndrome is misunderstood?
@@mwernli2886 as with a lot of disabilities, i have seen that some people would rather stare and make rude comments than walk up the person and try to have a conversation. People with differences still want to have human interaction.
Most disabilities are. Autism seems to be the biggest and possibly only one that gets a lot of recognition and understanding now. There are so many that go unseen and unheard of, so people don't understand it. There will always be people who stare and make rude comments even if they know what the situation is, that's inevitable unfortunately. More research needs go into these diseases and don't because it won't make them a freaking profit and it's absurd!
I appreciate the father being honest, saying not to empathize all the time. Sometimes that's our default response when we don't understand a situation, or we're afraid to ask the "wrong" questions.
These interviews are some of the best and most informative content out here and the response is proof of that. My only hopes are that children continue get the help and attention they need, and more people start producing quality content like SBSK does.
I love it when Lilliana's mom was talking about how watching her eye gaze because she has more control of her eyes, and Lilli is sitting there actively looking allllll around, proving she's listening, agreeing, and showing her eye gaze skills. Go Lilli!
my daughter has a similar disease to Rett Syndrome called Batten Disease. it is the most devastating thing in the entire world. I'm so sorry for Lily and her family.
I’m so sorry about that. I wish you all the best, and may God bless and strengthen you ❤️ stay strong friend
“I can do all things through Christ who gives me strength” Philippians 4:13
@@Hellohihey670 Please don’t force your religion on people. Not everyone likes Christianity.
My heart goes out to you, your daughter, and all her other loved ones.
Your daughter did a video on this channel, right? If I am thinking of the right person, I’m so sorry.
@@KANDI- yes more recently.
Lilli is such a wonderful little girl, she smiles so much even when life hasn't been v fair to her and her smiles are just precious. I honestly cried a few times watching this cutie struggle but she still manages to smile! And her mother is so so caring, she deserves the world. You can genuinely tell that she's a gem and that she loves her daughter unconditionally just by looking at her( the mom).. you are precious lilli❣
I get so happy when I see fathers who are engaded in rasing their children❤️ Such a beautiful family!
yess this! my dad drifted away from my mom as soon as they both realised my brother regressed permanently. for what its worth i want Lilli's dad to know that he's a superhero in my eyes
Absolutely! My husband is completely checked out with our special son as well. It makes it so much harder! That support is everything!
@@RosieDozie I'm so sorry to hear that. You and your son deserve his support
Too many men just…check out, leaving an already heavy burden to be even heavier on their wives and other women in their life. I can’t understand the lack of empathy.
Oh my goodness that poor mother. She is so anxious and sad. Lilly is amazing. I just hope they find joy again ❤
I think Dad was right at 14:30 to have a life that was full of memories,family, and friends. Well, I think this family made a lot of new friends today.
I can’t imagine how these interviews might make some folks feel vulnerable. Thank you to this strong family and to Lili for sharing your story! 🥰
I wish i lived near this family! I would definitely ask what i could do and lend support. The father crying broke my heart when Chris asked him what his hope was for Lilliana.
Such loving parents. 💙
Lilly, you are a sweet, sweet soul!
💜
Hey mon I am the disabled daughter and well your a great mom, mine too, but for the sake of both you and Lilly let go of the guilt as much as you can it's a mind trick. You do great and don't need the extra hurt. I can tell my mom and I know Lilly would tell you.
Hello Lightweaver how are you doing?
@@austinhowland300gmail. pretty good today. How are you?
@@lightweaver1839 I’m good thanks. Where are you from?
Hey thanks for talking about therapy. We NEED TO NORMALIZE seeking out therapy. It’s so important and can certainly make a fabulous difference in our lives.
Great job 👏 and THANKS! 🎉🎉🎉🎉
I have an adult autistic son. He's higher functioning but I didn't know that when he was younger. I see the pain and worry in these parents. I've lived it. I still worry but as my son has gotten older I've been able to let some of the worry go. Chris and Alyssa seem like wonderful parents. Lilli is adorable. You can see her trying to get her words out. Her expressions are very readable. Many blessings for this family.
This has been one of the most raw interviews I've seen. The honesty of these wonderful parents. 🥺🥰
I'm sobbing, bc kids with Williams just want to talk and connect with others, express their joy through music and singing. It's all in her, she just can't let it out 😢
Beautiful girl, wonderful parents--as a mother, feel so empathetic for Liliana's mother
Hope to see gene therapy change this soon
Love from MD 💙
It is so difficult to have children with severe disability. But even “normal” children can be challenging. Raising children is the most important thing anyone can do, I think, but also the very hardest thing.
I feel for the parents, who want so much for their child, to be happy and able to communicate. They are honest and worried about Lili's future. Chris is always so caring and kind. Lili is such a cute little girl. I wish her and her parents, the best. ☺️♥️💐😇🙏🙏
I always love your question "If somebody wants to be friends with you, what should they do?" Because the answer is always "just come say hi". No matter what, a human being is still a human being. They all just want to be loved!
Lilli just exudes sweetness; her demeanour, her little face, that big smile... I can see that she is a friend anybody would be thrilled to know, and I’m so pleased we got to meet Lilli and her lovely parents today!
Brightened my day for sure! Thank you 🙏🏼💖😊
Dear Lilli & parents of Lilli - You are such a bright, loving and gorgeous person! Your parents really made a miracle baby happen, and I'm so proud of the 3 of you.
It isn't easy at all to be a fulltime caregiver for someone you love so much, while seeing your baby struggle with such painful problems and regressions.
But, parents, you have done and are doing such a terrific job! Thank you for the honesty and clear words, I truly appreciate mom & dad talking about the stunningly amazing *and* incredibly hard times.
A person doesn't need to speak words when their eyes and subtle gestures alone say it all.
You all are such treasures. It speaks volumes how much the parents love their baby, ya'll are the most pure representation of unconditional love from all sides.
I'm wishing the family tons of happy times, peace, health and all the luck in the world! ☘🍀
There’s something supernatural about the experience of watching these videos. Not that the people are superhuman, but the experience of being immersed in their stories, hearing them share their pain and their joy. It brings life into a perspective that’s bigger, yet more intimate. My own pain feels lighter, yet I feel more connected as a fellow participant in the human condition. Life is pain and joy, and these videos are tiny, concentrated jewels of life. Best channel on youtube. ❤️❤️❤️❤️❤️❤️❤️❤️❤️
Sad to see her struggling to communicate. But that makes one smile, one focus with her eyes is so valuable. I watched her 20 minutes and i was like "yeeeahhh" when she smiled ^^
When she smiles at the end after all the compliments I found myself smiling too.
What a mixed bag of emotions I have right now. I mean just to watch Lily struggle so much is heartbreaking really. And seeing the pain that her mother feels is also heartbreaking. But then there's so much love that they have for Lily it's incredible. And the patience and the perseverance it must take to get her to therapy and all the different things Lily needs to do just to keep going. I know that I've been watching these videos for years now and that everybody, every person severely disabled or not, deserves to be loved and cared for and seen as a whole person. But to be honest sometimes that's really hard to see and to feel. I'm disabled but nothing like Lily is disabled. And I feel a lot of sadness because I can just imagine she remembers what it was like before the regression. thank you Chris for your open heart and the way you always embrace every single person that you spend time with in an interview.
Thank you for sharing I feel like I have a general understanding of what Williams and Rett syndromes are and I'm ashamed to say I never even knew they existed before this video. The smiles Lilli gave Chris at the end were soo sweet!
I love Lil so much, i’m a classroom assistant in her class and she always brightens my day
Love how the dad spoke about getting over a neat habit to give his daughter freedom as feeding herself. Her eating the popcorn is adorable 🍿 her hope for her dad will be blessed she has two loving parents and this is one huge memory like the interview and just loving her and that hope will be fulfilled. God bless them ❤️
I love that you do this. Taking time to meet sit and talk to so many beautiful children. We just found out this year that my 5 yr old granddaughter has Rett. I wanted my daughter to watch this one. Thank you for all you do. Much love and support always to you and all these beautiful children and adults you interview...
That dad crying :'(
Lilli has a very pretty smile! We can see that she's smart. The way she communicates with the most she can. It must be really frustrating but she's doing her best. Her straight look on her dad when he was about to tell what he hopes for Lilli, intense... And it melts my heart when she giggled right after her mom told her she has the best giggles.
I was a therapist for Lill a couple of years ago. She's such a sweetheart and a quick learner. Her parents are so lovely, they're such genuine and down to earth people. I think of this family often! So glad to see all of your faces again :) x
I agree with the parents, her eyes are so special and communicative, she can truly tell you so many things with them.
I love by the way the phylosophy of the father about the concept of "Freedom", you guys are amazing.
Thank you all for your honesty. It must be difficult to talk about everything you've been through but it's such an inspiration to see how you take each day at a time and just continue to love unconditionally. You all seem like really kind souls, wishing you all the best
You can see the love and pain of these parents. Struggles are real. I truly hope your days blessed and that you find joy every day.
She seems like she has so much to say. She definitely understands everything being said. She must've cried so much in the beginning because she no longer was allowed to communicate outside herself anymore
I can only imagine how frustrated you must be Liliana! You must love your parents extra much, because I’m sure they always try to understand you and spend lots of time with you 🤗
I love her big, big smile after Chris told her all these amazing, true things about her. She is so precious! Lots of love to her and her family
I’ve worked with kids with both these syndromes and it’s really great to meet Lilli. Thanks to her and her family for allowing us to learn more about her. It’s interesting because both are known conditions, but I’ve worked with a couple children who had unique genetic conditions, some believed to be the only recorded occurrence in the world and so I have met parents who like Lilli’s family really can only speculate on what the future holds based on general information about what things might be impacted. However, things like prognosis, life span, interactions with medications, etc is really all a bit up in the air. So from a human and professional perspective, I genuinely appreciate hearing her story and their experience of caring for these ultra rare kiddos.
Hello Colleen how are you doing
With kids like Liliana, there should be something more to help her communicate! I can see the words in her eyes, so she has them. Lots of verbal people don't have that.
From what I've seen through this channel, is that people with Williams Syndrome, (at least the verbal) can be so full of life, and talkative (in a good way) so much to the point where I find myself thinking, they're so outgoing and know how to love, and can be so expressive, (verbal/non verbal) while I'm over here reclusive and literally afraid of everything, I wish I had even half of their uniqueness, but I absolutely love hearing their stories, they're so genuine.
Our daughter has Williams syndrome and this was so nice to read ❤️ I hope you can draw on some strength to come out of your shell a little if that's possible for you
@@jadew2072 You are extremely lucky than, I see it as a gift more than anything else, and I'm sure you are proud of her, thank you, I am currently trying to get out of the 🐢 club, it is difficult, but fun at the same time.
Chris I love you man. So glad we have good people in the world like you.
I love your videos, Chris. It’s teaching us so much about communicating and understanding the differences we face. I have to say that Lilly, you are just the sweetest, most precious little girl! I absolutely love your beautiful smile and although I can’t begin to imagine what it must feel like for you or your parents, I’m so glad you have each other. I see so much love and such an incredible bond between you all, it’s so touching. Sending hugs and love to you, Lilly! 🤗
I tell all my doctors and therapists about your channel and how much joy it brings me
I felt the question "what are your hopes for Lilli" like a punch to the gut. My son is severely autistic, and like Lilli's dad, your hope is for your child to be happy, loved and accepted - while knowing they will also be missing out on so much. Things we typical people take for granted, such as independence.
W0W - such amazing loving parents. So much challenge for Lili. So hard not having verbal ability and severe disconnect with brain / body connection or coordination. Love and So Much Respect for This Lovely Family.
Sweet girl, I can't imagine the frusyshe must feel daily because her body does what it wants and she has no control. She is adorable and sweet. I truly hope there is a way one day soon for her to communicate easier.
Their marriage is incredibly challenged. It takes above and beyond that extra. They're my heroes ❤️
Hello America 👋 how are you doing
Even if she is nonverbal, her eyes and facial expressions say so much! This shows verbal communication isn't necessarily the only or even the best way to communicate!! 🤗❤
What a beautiful family! Lilli is so easygoing and sweet. While I don’t have Rett Syndrome, I do have Tourette Syndrome, so I can definitely relate to the exhaustion of having motor difficulties. That’s one incredible child for sure :)
That big smile was awesome when you asked to be her friend! So precious. ❤️
The Lucidity of children, I don't know what else to say other than that. This is my favorite channel, you've helped me personally sort through what I'd like to potentially do as a career by teaching and showing us how to communicate regardless of circumstance. It isn't as hard as everyone always has made it seem, yes there will be difficulties but the way you simply take the time. Taking the time to listen and reciprocate communication can save or change someone's life. Thank you Chris, and Thank you Lilli and her Family!
She looks like she’s aggravated when asked if she wants to say something… I mean, aggravated because she wants to say something and she just can’t😔💜
In a world where a lot of people, able in body, & mind, are busy creating non-existing problems in their heads, this show comes along to give a reality check, about what real hardships can look like. Lilli, & her parents are amazing, & they kept it so honest, & heartfelt. Hope they can navigate through their lives, as smoothly, as possible.
Hello Kalindi how are you doing?
Said a prayer for that sweet family! Mom, you are doing great!
Lilli is an absolute wee star and is very lucky to have the parents that she does. They really do seem to be a warm and loving family who are facing immense hurdles with grace, fortitude and love. Keep up the great work
Been busy with uni and hostel life, watching a sbsk video after ages and I feel so good and emotional
This is the one the had me crying! Lilli, is a doll; she gave me 🫶🏻 for her by just seeing her trying to interact! I feel Mom&Dads overall sadness! I want Mom to remember, she has to take care of herself, and know there are many things out of her control! You have a community here who are great listeners, so reach out…. Sending my love to Lilli …. You’re adorable, sweet & have a wonderful smile.
Dear Chris, Lilli and her mum and dad! Thanks a lot for this amazing special interview. This one hit home, because I used to have a little great cousin with Rhett who died at age 2 a couple of years ago. We never met in person, because at this time our families lived on totally different continents (the Netherlands/Germany and Curaçao), but I still have a photo of little Rania. Although her smile mostly wasn't directed at a person, it was as a great, bright smile with her big brown eyes just as telling and deep, as Lilli1s. I like it very much, that you don't give up on your little girl, but let her do as much by herself, as she is able to do. And I really love, how you use different kinds of communication. I have another great cousin who is nonverbal, but it is talked to him in a normal, age appropriate wayþ. Questions are asked most of the time as open questions (for example instead of "Do you want a peach-yoghurt for dessert?" my great cousin is asked "What do you like for dessert? And when do you want to eat it, now or later?"). Nonverbal people have a lot to tell, we only must want to take the time and listen carefully.
Lilli and your lovely parents, thanks for being a blessing in living and sharing your special life. Chris, thank you for your wonderful work and giving people voice and letting healthy people see, that life is still be worth living - even if you have got a handicap and are disabled!
The mom seems like such a nice, sweet, funny, and caring person! 💕 Both parents are such sweet heros!
Lillie seams like a gem of a young lady. I’m sure it is frustrating to be and feel social but not have the words. What a beautiful family. So loving and compassionate. Mom and Dad are experts on reading Their little girl and what she is communicating and feeling
This family has so much love, it's beautiful to see
Poor little soul, how very sad! I feel so sorry for her parents, I can't imagine how they feel.... Her dad crying and saying that he would love for her to be able to live and experience what everyone else does broke my heart. 🤧 Lili is such a bright child who has so much to say but is trapped in a body that doesn't work so of course she feels frustrated!
What a great kid! Her smile just lights up the room!
What a sweet heart. God bless her. and of course, you too Chris! XOXO.
I love how this channel puts my problems in perspective. Like I get to walk... It helps me to be thankful for things I take for granted.
There's such a beautiful, vivid soul in that little girl. Seeing her smile changed my life.
The dad's reaction when Chris asked him what his biggest hope for Lilli was heartbreaking. I became teary eyed. I hope for the best for Lilli and her family.
Wow. He is a wonderful man. So kind and patient. Love to watch him talk with special people. Lilly is a beautiful soul!! 💜🌈🌸☀️. Lilly is very lucky to have loving parents.❤️
Lily has the sweetest smile it really melted my heart everytime she smiled. ❤ Her parents are so strong and I really respect them for how vulnerable and honest they were about everything. Such a loving family, i wish them health and love always 🙏❤❤❤
Wonderful Parents! I get the anxiety. I would feel the same way. When Dad choked up when asked about his hope for his daughter, I got choked up too!
Hello Lori how are you doing
I love how honest her parents are about how truly difficult it all is, their vulnerability is so admirable. But so is their strength. They love that little girl and have devoted their lives to her. As much pain as it might sometimes cause them, they follow through and show up for her every day. Beautiful family ❤️
I loved the moms honesty when asked how it was to be her mom.
What a great mom and dad. Lilly is precious.
Liliana , you are so expressive ! Thank you for the interview xxx
This is by far the most precious young lady I have ever seen on SBSK. She is so sweet. I hope everyone who sees this is touched by this precious little angel. Hey Mom and Dad, You guys are doing a spectacular job raising this gift from God. Bless you both. Your unconditional love for your child is absolutely real and beautiful to see. Thank you Chris for this wonderful time you have given us with her.
My cousin, Lucia, (who was like a sister to me) had Rett Syndrome, she was four years younger than me so we grew up together. Lucia never said a word because her regression started pretty early in her development. Regardless of that, we found our way of communicating until the end. It's amazing to be (and to feel) understood without words. She was the most important person in my life and still is. Best wishes to this lovely family and thank you for sharing this with the world.
Thanks for sharing your story and I’m sorry Lucia is no longer with us.
What a beautiful girl, inside and out. She is lucky to have loving, caring and supportive parents and they are lucky to have her.
I don’t think I’ve seen anybody with such expressive eyes before.
I wish her and her family all the luck, happiness and love in the world.
"You are just a wonderful person" After these words she looked so proud of herself, almost like telling "Yes, I am the best girl, You should feel lucky to sit here with me" :) Great girl, seems really interesting and intelligent to me. Hope she will be fine
You are such a beautiful family, God bless you! Much love for Lilliana’s supermom 💛
Wonderful, understanding, loving parents. I can't stress that enough, god bless.
Hi Lilli!! Thank you for giving such a great interview! You are beautiful and so awesome! My big sister has Rett Syndrome. She was my best friend growing up and my maid of honor in my wedding. She’s 44 now and lives with my mom. Your mom and dad are so lucky to have you !! 💜💜💜
Lilli is beautiful 💜❤️
Mom and dad both of you are doing a great job .
My daughter has atypical Rett syndrome which is now known as cdkl5.
My daughter is going to be 27 yrs old this July. I can feel all your anxieties because I have them also . My daughter is non verbal but for a few words . She has cerebral palsy do to seizures . Our kids are so brave and wonderful ❤️. My daughter was diagnosed with idiopathic epilepsy at 6 months old . She started going backwards. In 2012 we got the diagnosis.
Rett and cdkl5 have overlapping symptoms and on the x chromosome. Cdkl5 has many mutations now. My daughter uses her eyes and vocal noise to get her point across . I use yes or no questions also. Music is my daughter's favorite thing along with animals . Thank you SBSK For sharing her story . RETT STRONG
LOVE HOPE CURE 💜💜💚💚❤️❤️