A Kid with a Rare Form of Dwarfism (8 Years Old and Nonverbal)
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- Опубликовано: 21 сен 2024
- Jude is diagnosed with a rare form of dwarfism known as rhizomelic chondrodysplasia punctata. At 8 years old he is considered a long-term survivor with this disorder. Jude is the center of his family's world and they just want to make him as happy as possible.
Connect with Jude's family at / hannahkatelyn
Support SBSK at / sbsk
SBSK's Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
These parents are young and seem very mature. Bless little Jude.💖
I had the exact same thought! 🥰🥰
I was thinking the same! I could listen to them all day, so wise and calm!
@J. Marta
Yes and the young man has some cool hair! 😎
I was gonna say. There’s something very special about them. And you can really see, through the way they look at him, the love they have for their son and the joy they get from him
Vocês são maravilhosos Deus abençoe.
I had a classmate with rhizomelic chondrodysplasia punctata. She was lovely, lit up the room with her laughter, and the whole Kindergarden class was really fond of her. She sadly passed away that very year, but I never forgot her. She really touched us all, she really had a lasting impact on the way I connected to others.
❤❤❤
Rip beautiful joyful girl ❤❤❤
RIP for the girl :(
Jude looks like his Mama! And that hair is so adorable! I'm trying to find a diagnosis for my toddler right now. I don't really have any family living and my baby's father won't even admit there's something going on, so I can imagine how awesome it felt to go to that conference and feel like just Jude's mom in a room of other moms. I'm glad she got that experience! Jude's a lucky little dude to have a supportive, loving family 😊
Good luck with your own child! But yeah, they feel like a happy family amidst struggles.
You are great and strong mom we all pray for you and your baby
Just do what you know is right for your child. Sometimes people feel like if they admit there is a difference in theor child it means there is something wrong with them. Sadly that ego hinders kids getting what they need. Hopefully his dad will get over thar. Eother way you're doing the right thingevery single person has differences some are just more noticeable than others. Doesn't make anyone less than at all.
My oldest has a chromosomal abnormality and he's had struggles since birth. But hubby had the hardest time when he was 4 and we learned he needed a hearing aid. And it was only out of fear he would be bullied not that he was actually upset about it. But we talked it out and we faced it like everything else. It doesn't change who our son is. It just is a part of him.
I hope your pediatrician has helped you in your search for a diagnosis! I’d think that would be the first place to start. Best to you figuring it all out, and I really hope your baby’s dad will come on board and also be of help. I know how it is to have a significant other that doesn’t always do what he should.
Looks like his mother???
This video shows how extremely important it is for families of kids with special needs to have a lot of outside support. These grandparents are exceptional, and Jude’s parents are so lucky to have them
Acceptance is key to thriving. Even accepting grief gives power to thrive. Nonverbal does not mean non-communicative. Grace and peace to all of you. We learn so much from you about excellent parenting, and grandparenting ❤️😘🙏🕊️💕
Exactly! Non speaking people can use sight language, writing, music, noises ect to communicate!
So true. Well said.
Agree whole heartedly. It has to be a living hell to know that death walks with them so closely. I think that them being able to accept the unacceptable was such a wise decision and that it probably freed up their lives so that they can live in the moment. When their moments are measured in such a tiny life they will grab , hold and Love him and those moments that will add up to him having had as full and complete life as humanly possible. In my opinion These two are amazing people and exceptional parents !!!
@@CATNAPREAL1188 There was an SBSK video not long ago that featured a family whose young daughter had a terminal illness and I recall the father saying that there will be plenty of time to grieve later, but he doesn't want to waste the time he has with her grieving ahead of time. And that he wants to focus on here and now and enjoying life with her.
@@CATNAPREAL1188 the truth is we all walk closely with death but expect a long life that isn’t promised. We’ll eventually leave this earth but while we’re here we should live without any expectation of being here until we’re old.
Jude has the PERFECT parents for him. Such a sweet little family 💜
This family is one of the first I ever followed on Instagram years ago. Been watching their journey with Jude since he was a baby. They are such a beautiful, loving and sacrificial family. Jude is so special and his smile is so bright! His parents do such an amazing job giving him the best life ever. You can tell how very much they love him. I was so happy to see you feature Jude & his family. I hope they know so many people see their son, and are inspired. They are my favorite. ❤
What is their channel name? I'd love to go watch them too. ♥️
@@carrieanncancino5118 I believe it is @hannahkatelyn. I apologize if that is not it. I will check and let you know.
I was correct.
@@melissagoldsmith2570 I didn't find any content on it though
What’s there Instagram account?
I understand that everyone wants to be positive but saying that this poor child who's barely able to breathe, has a host of severe health problems and is barely existing is happy, is sheer fantasy. I am happy the boy is surrounded by lots 0f love and his parents have a great support system in THEIR respective parents. May God bless them all. This has to be awfully difficult despite the smiles.
Jude's parents are young, but they are also so mature and so down to earth. He is one lucky little guy, has a family that loves him and cares deeply about him. I hope Jude has a great life going forward, and wish this family so much joy ✌️🙂
Grandma is a treasure. They're all great folks, but her level of support is out of this world. Giving the parents a little break here and there is so important to refill their energy. Good job grandma!
Omg Jude’s smile is infectious! ❤️ How to live in true joy
He’s adorable. His smile just melts my heart 🥰
What a lovely family. Jude knows nothing but love.
My daughter had dwarfism. She lived about an hour after, birth and passed in my arms. She was not comparable with life. Your Jude has me in love! My Opal had a head full of black hair! I now have a son who is disabled, as well. Jesus lives in our babies! It’s beautiful! So thankful, to hear your families story! Saying a prayer for your family! So thankful, you have been given such a gift!❤
I’m so sorry for the loss of your little Opal🌷
Никакой Иисус тут не живёт! Это просто Мутант. Похож на дедушку. Нужно
Jude is a beautiful child. Thanks for sharing Jude with all of us!
This kid chose the best family by whom to be cherished. Love to them, and love to SBSK for sharing his life with us.
Sitting through the uncomfort til it fades away is an excellent descriptor!
I'm so happy to see all these warm comments 🥹 in my country the most comments under this type of videos are like "parents are egoistic, why did they need to bring such baby to this world, i don't want my taxes support them etc." and it breaks my heart every time 'cause my daughter also has a rare form of dwarfism and she's the sweetest girl, but some people only see her height.
I've been totally addicted to this channel. It teaches me so much about things I knew very little about, and things I have never even heard of before. As a couple people pointed out, Jude totally takes after momma's looks 😍 It's so sweet.
Wow. Those parents have some of the strongest hearts and minds of most people. I couldn't imagine what the mother went thru mentally during her pregnancy. I hope Jude lives a good long life.
Anyone else really enjoying their home decor? The interior design is absolutely lovely.
God Bless this Family
Intuitive people say that children pick their parents...idk if thats the case in every sense. But Jude's soul seemed to pick an extraordinary and amazing family!! Blessings to all of them!! 🤎🤎🤎
All children choose their parents & parents agree to parent them. That might be an easier pill to swallow for some & others might say-why in gods name would I choose the parents I did? But it’s all about lessons, learning, growing, experiencing what needs to be experienced.
4:34 As a mom of a child with special needs, I couldn't have said it better myself. What a beautiful way of expressing the way a child like Jude can change our hearts. He is a blessing and a miracle and a gift to the world. Bless this family for embracing the gift God gave them. 🙏🏻 ❤
AMEN 🙏🙌❤️
He's seriously so adorable and these parents are so warm and loving; any child would be honored to have them as parents.
He is a beautiful child,not saying this out of pity,he is beautiful.Kudos to the parents,their efforts and love for their son shows.God bless them and keep them ❤️
Jude, you are a warrior! 8 years old and already beating the odds. You reminded me today to practice gratitude for each moment. Thank you for that lesson. God bless you and your lovely family. Thanks to Jude, mom, dad, grandma, and grandpa for sharing your stories!
This boy is truly a fighter!
The light of Jesus really shines through this family. What a precious little boy Jude is. ❤️
I could tell they were Christians just by the way they talked about joy. God bless them. I hope the clinical trial helps him. Who knows? Maybe it could help Alzheimer's patients as well.
@@nightyew2160 me too - that and a few other little things that made me wonder, but just the general peace they all seem to have I really noticed, and weirdly enough how beautiful their home is made me wonder as well. Wealth or good decor is not a mark of Christianity obviously, but for some reason they just seem like they are covered in the favour of God! And yes I genuinely hope that the trial could be of use to as many people as possible and would reveal new solutions to the science and medical community ❤️
Also just wanted to add that as a Christian, sometimes it seems like I supernaturally recognize the Holy Spirit inside of other people, which is pretty cool :)
You will know them by their fruit! Their fruit is peace, love, and joy! So thankful to see it!
Yes❤ They will know by our love...by our love ❤️ 🫂
Thats so interesting that they mentioned the cbd oil charlottes web, my younger sister has down syndrome and began having seizures a few years ago and that vastly helped to decrease the amount and severity of seizures she was having, I love this channel so much because it is so important to tell the stories of people who happen to have special needs, everyone deserves love and support no matter the circumstances.
I'm moved to tears by how full of love, grace, hope and everything holy this family has. I wish everyone was able to grow up in a family like this.
I love all of your videos. They are warm and compassionate and so caring and loving. Proving to me that there are good people in this world who care to show beautiful people all deserve these basic human rights of love and compassion. Whether they're disabled or not.
Your channel is just extraordinary.
Thank you for all you do.
These parents are amazing parents!!! And the grandparents are amazing too!!! They are lucky to have a wonderful young man like Jude to love!!! As well as Jude is lucky to have them!
Such a lovely couple, grandparents too! Happy to see that Jude's parents have family support that allows the two of them a chance to get out together. Its so awesome to see the love in their eyes when they look at Jude. I sure hope this clinical trial really helps, hopefully in a big way! Best wishes for continued success for Jude - let us know how the trial went (if you are allowed). Thanks for sharing!🥰
There was just so much about this interview that I loved. The fact that Jude is on Charlotte's Web cbd- and it's helping his seizures! How his mama described him as nocturnal- that was cool! The fact that when I saw Jude- despite his size and his diagnosis- when he's laughing, I could see the 8yr old little boy in front of me... That was precious. But most of all, Jude and his family just seem like amazing people. What a wonderful support system they have in place. I hope they document their journey, they could teach us all so much about life. Thank you for sharing your story with us. 💜😊
Another commenter said the family has a YT channel
Jude is the most precious little boy! He has a wonderful family, and you can tell he experiences so much love every day. Thanks for sharing their story!
Hey Jude! This was a great video. We loved meeting you and your family. ❤ Thank you for sharing your story with us!
I just want to say I really appreciate you addressing him in a direct manner. Too many times someone with disabilities will be ignored, i wore my sunflower landyard at an airport once and everyone ignored me and addressed my parents instead because they assumed I could understand or such. I’m sure Jude really appreciates it as well, so thank you
greetings from germany-an i pray for blessings for Jude-his parents and family to have power to care him all time.🙏
I remember watching another video on this channel with a brother and sister who were Rhizo kids. I'm learning so much about these many syndromes from this wonderful channel. Chris really does a great job with this channel.
Yes I saw that too and they were 15 and 12. I'm surprised they're not on sbsk and I wonder if they're still alive.
@@blairariavanderkamp3405 There have been a number of friends that Chris featured here who I did think it would be nice to get updates about. I'm sure you must've seen the one about Jeff, who wanted a girlfriend. When he came back on to share his wonderful news, I was so happy for him!
@@margiecasey9428 Yes I saw that he found himself a wife! He was so overjoyed and beside himself lol ad yes his happiness is definitely contagious!
You really can feel the love the parents and family have for their kid. This is why I love your Channel. 🇫🇷
God bless Jude and his precious, loving family. Thank you so much for sharing your joy with us. ♥️🙏☀️
Why would anyone feel uncomfortable around this sweet little boy? I know it’s because some people haven’t been exposed to people with disabilities, but it’s still hard to understand. Jude seems such a happy, positive, good natured, brave, and all around amazing child❤️
What a beautiful thing to see him laugh and giggle! I could watch that all day. I would love to see more of him when he's awake. Such pure joy. What a precious angel!! 👼 ❤
Jude and his family are so sweet and loving with each other
Awee! Mr Jude, the 8yr old boy with the perfect awesotude!!
Bless mom and dad's hearts for being brave enough to not let judes cousins lack of diagnosis in the beginning cause any animosity. You all are so brave, and strong
Jude picked the perfect parents for himself
What a beautiful loving family! Thank you for introducing us to Jude and his special family! ♥️
I loved when dad said they write their own story. God bless them. And wish all the very best during the clinical trials! 🙏🏼♥️✨
What an amazing supportive family! Jude’s parents are good people saying there son is just like other kids but a bit different. Jude scored with great parents like that!
Jude is an absolute adorable blessing❤ Judes parents and grandparents are perfect! I love their peaceful and loving personalities. Judes Mother and Father are incredibly strong and loving. Truly inspirational❤ God bless you and your entire family
Hannah is the sweetest mom & person! I follow her on Instagram to watch their journey as a family and Jude is so very loved with the best hair! This family is the living embodiment of Joy Like Jude!
Jude is the sweetest little guy, I couldn’t just stop smiling when his grandma talked to him and he got excited. Wish him and his family the best 🤲🏾🤎
Sweet Jude is blessed with a loving family ❤❤ God bless them all.
Jude is such a precious boy! His smile is so genuine and sweet. SBSK, could you please do a video on Russel Silver Syndrome? My niece has it and I would love to have more resources and show her she’s not alone as she grows up, it’s hard to find videos about RSS that aren’t either surface level or sensationalized
I would love to know more about it myself!
Jude is amazing little boy God bless him and his family
Blessings to jude and his parents. Personally my parents and family are so supportive with my son who has Cerebral Palsy. I love this channel cause all the parents who have a child with a illness or disability I feel we understand each other.
God bless Jude His Mom and Dad to give him a happy life. 💗
He is so lucky to have such a loving family 🙏❤️
I had to pause the video just to say what a rad name!! Jude is awe inspiring when it comes to fighting his illnesses. he truly embodies the ability to take a sad song and make it better. he is a shining example of genuine joy and happiness. best wishes for an amazing family.💖✌🌷
Jude is so beautiful and so adored. Such a loving family, every child should have such loving people in their lives.
What a lovely and supportive family, and what a sweet and happy boy 💕 I love getting to meet ("meet") so many people through this channel.
I’m so happy to have found this channel again. I feel ashamed I’m depressed but should be happy with what I’m blessed with. The people you interview are so amazing and inspiring. I hope for the strength displayed here.
Oh my what a privilege and a pleasure it was to watch this video. Jude is such a wonderful little guy. He just loved being with his family. Jude is so lucky to have such amazing parents and grandparents who all love and adore him. This is a story of love and hope. I am so thrilled to have watched this story of Jude. Sending all of you all my love. Thank you for sharing your story. Jude is so cute, and obviously loves you all xoxo
God bless you mama. Your strength is amazing. The love you have for Jude is inspiring. You don't have a special child, you're a special mother. God has seen your tears, and He cares for you. What a lovely family 🌹
This channel and Chris do more for society and understanding those around us better than most channels. Love this concept and bringing awareness to individuality. We are all unique and deserve to be recognized and acknowledged for being Human!❤
Edit: May these parents and Jude be blessed with health and prosperity. And Jude being Nocturnal is adorable! Lil Owl 🦉
What an awesome little guy and couldn't have a better family I was born with a form of displacia too pretty rare MED multiple epiphyseal but it's nice to see he's loved and supported that can mean the world having never had that as I was homeless at 13 in the 90s haha so there's a great joy in seeing people get the love they need 😁
His smile is priceless and the joy so contagious! What a gift to us in this world, thank you for sharing how kind and intentional his parents are! Beautiful family
It is shocking learning about what technology and the medical field are able to screen during the first trimester of pregnancy. I have never heard of these genetic mutations, thank you for spreading awareness.
It is so wonderful and inspiring to see such fantastic parents. Their love for him is just so radiant. Just through a video I can tell Jude has one of the best families I’ve ever seen
In these videos, I always love to see such a supportive family. I find these videos incredibly educational and I appreciate being able to learn through through them. I love to see such supportive families too, and hearing how they pick up on certain little details like when Jude is getting poorly, you can really see that this family would do anything to make Jude more comfortable and happy.
He may be sleepy throughout this video, but that didn't stop him sharing a big smile with his grandma 😊
Jude is so precious and his family is so lucky to have him.i had a special son and they are gifts from God.
It’s beautiful to see these babies in need have such loving parents. ❤️❤️❤️
So sad. Could not imagine my kids having a diagnosis like this. Heartbreaking! I’m certain that their beautiful connection as a family is the cornerstone.
What a beautiful beautiful family. So loving, so compassionate, so informed on everything medical for Jude, and so very very loving. Its really sweet you can see the love they have for each other and Jude when they look at each other its in there eyes. Jude is one lucky Blessed boy. The parents and grandparents are Blessed to have him as he is Blessed to have them.
I wish all the best for this sweet family 💖
Jude has amazing parents and grandparents! Praying his clinical trial goes well!! 🙏🏻
He is an absolute doll and I’m incredibly jealous of his hair. I always enjoy watching this channel and seeing all you do for all the friends you meet.
Beautiful family. So loving and eloquent. Jude is lucky to be surrounded by love and affection 24-7 ❤
Awe what a sweet little Jude ❤ that’s a cute name!! Being nonverbal is hard but his parents and grandparents are so incredible for being a voice for Jude he is a delightful little boy😊😊❤❤❤
To the parents and grandparents of Jude.. You’re doing AMAZING. I’m at the part where mom is worried if she’s doing the right things with him. Trying to keep him safe and healthy but also trying to give him a good happy life. His joy is radiating through the screen. You’re doing awesome ❤
Jude, you are very attentive, we can see you paying attention during this and this was a beautiful interview Chris, and Jude you and your family seem incredibly compassionate and caring!
Hey Jude! You must be so happy to know that each and every person who is watching your video loves you very much!
And to Jude’s parents: I don’t know you, nor have I ever met you, but I have much respect for you both.
I've been following this family on Instagram for years now (since Jude was about 2) and I am in constant awe of their strength!
Awesome parents! Awesome kid! Awesome tribe!
Seeing his parents hopes & grandparents help out so much & their pride & joy at their first grandchild just fills me up with so much love! Thank you for sharing your family with us Jude!! ❤
Bless this man for taking the time and creating a platform for these families to be able to spread the word and educate the world on diseases they deal with every day. This man is such an Angel.
God bless this family. Jude has strong caring parents and family. Wishing the best for you all.
Touching report. Full of Faith, Hope, and Love. This is a Beautiful Family. God is good.
I’ve followed Jude for years now and it made me so happy to see him cross paths with this channel ❤
Jude is so precious & sweet with a beautiful loving family.❤🙏❤
Awesome family....being a grandmother myself, I really respect that the Jude's grandparents are so involved, and supportive, and loving!
What a darling family! So glad that the Grandpa talked to us as well.
I don't know how they keep their house so clean when they have a little mite who is nocturnal. :) And it's a gorgeous home. I love the photos and the photo album of the ancestors. It just brings a real sense of family through the ages. That sounds dumb. But I hope ppl know what I mean.
Jude; you are such a handsome kid and I love your long hair! Much love!
Chris I hope you do a follow-up after Jude has, or during, his clinical trial .
♥️♥️♥️♥️Jude you are truly a blessing to your family and loved ones and the rest of the world. I hope the clinical trial helps Jude in his lungs and in his brain. He gets exactly what he needs. ❤️❤️❤️❤️
What a handsome boy, Jude, is! So glad to have gotten to see this beautiful and strong family today! I wish Jude and all that get the privilege to be in his life and love him the very very best!!
Jude looks just like his mama! Praying these trials work! Great job parenting ❤. I see the love surrounding him
What an incredible and beautiful family. I felt so much pure joy just watching this. Jude is SO adorable! I am so impressed with the way you all support each other and clearly adore him. All the blessings in the world to you all ❤
AS ever, I am deeply humbled by the fact that these children bring so much joy and are such great teachers to all those they touch is never lost on me. Despite their circumstances these parents are more grounded, grateful and present than most parents of normally developing children. Especially the parents with terminal children.
As I do each year, I pick SBSK (or someone they’ve featured) to highlight for my Facebook birthday awareness. This yeah, I’ve chosen SBSK directly and just shared this wonderful video of Jude.
I hope to spread awareness and 🥹 and earn money for these wonderful souls between now and my birthday next month (3/3 for those who are curious ☺️). When ever I am low or troubled, I especially find sanctuary and inspiration in theses kids, their families, and the mission of this channel. If they can find a way to be such sparks of joy, then so can I.
Love you all 🤗
I absolutely adore Jude! My oldest is nearly 9, and I have followed Judes story for many years now. Hannah and Sullys faith and strength never ceases so amaze and inspire me. And their support system is just phenomenal. Such a wonderful family little Super Jude has surrounding him❤️
Jude is just a bundle of joy!! Such a cutie! The whole family is precious. Their positiveness is admirable. Grandma has gorgeous hair!
Jude seems so happy! All kids need a loving family like jude has, i think that the love that his parents and grandparents give to this little angel makes all the diffence in the world ❤
Thank you for everything you do, Chris.
What an amazing family. Sending much love and positive vibes for the trial ❤
Ohhh I look forward to an update on Jude in the future and to hearing that the clinical trial has successful outcomes. What a wonderful family xx