Surviving a Heart Transplant as a Kid (Kabuki Syndrome)
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- čas přidán 6. 04. 2022
- Noah recently received a full heart transplant and is diagnosed with Kabuki syndrome. At age ten, he is recovering from this surgery while surrounded by his loving family. Together, his parents and siblings are working hard to make sure Noah is happy while he adjusts to his new heart.
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My little brother has kabuki syndrome, and is both so different and so similar to Noah. I've never met or seen another kid with kabuki syndrome because it is so rare so seeing this made me very emotional. I wish the world would give these kids a better chance to fit in. My brother struggles every day because people rarely treat him like a person. Noah is adorable and I wish him and his family the best
I'm sure your brother is wonderful! Thank you for sharing. I watch these with my 3 and 4 year olds so they get to see kids who may appear different and have various conditions. We can talk about it and how we can treat everyone well. We love SBSK!
@@pennyp7382 reading this makes me so happy, your kids are going to grow up to be wonderful people with the biggest hearts. Thank you ❤️
Praying for your brother and your family
How old is your brother? We just got the official diagnosis of Kabuki Syndrome he will be 2 on May 7th. Gage has a cleft palette, ptosis, VSDs, low muscle tone, and sensory issues. This is such a new diagnosis we (especially myself) and struggling to navigate this disorder and find out everything I can. But all cases seem a bit different and not knowing the severity of Kabuki in my child's particular case is nerve wracking. Anyone who reads this and has ANY insight or Kabuki Syndrome or knows of a Kabuki Syndrome support group for parents I would be FOREVER grateful
@@emilysusanvanvalkenberg5978 unfortunately it took doctors almost 10 years to diagnose my brother, because the conditions like you said can vary drastically. I'm very happy you were able to get an answer so quickly compared to my brother, he just turned 27. Unfortunately he will never surpass the mental age of about 12 so he will always be my little brother. The best advice I can give you is don't ever let doctors brush you off, and if your gut instinct is telling you something it's probably right. Find a doctor that is somewhat knowledgeable of kabuki syndrome and listens to you and stick with them. I honestly don't know of any support groups but would love to find some myself. My family has struggled finding help for him where we live (Texas) and it can be very frustrating, but like I said as he gets older don't ever let people brush you off or not take you seriously when it comes to his well being. I lost count of the times his extra activities, such as speech, muscle exercises, etc were ignored and we were blatantly lied to when it came to his school care. NEVER let people do that to him or you. He is a person and is worth everything, just like anyone else is, and so are you. If you have any specific questions I can do my best to answer, such as his symptoms and how he has changed as he's gotten older. Feel free to ask, just remember you're not in it alone even though it may feel like it at times ❤️
Update(All the Amazing replys, thank you. It really keeps us in good spirits❤)
We are forever grateful to people who donate their organs for transplants. Especially thanks to the family’s for understanding.
My uncle will be having a kidney transplant soon. I hope everything goes beautifully.
good luck to your uncle fam!
@@rainbowfrog7420 Thank you so much brother 🫂
God bless you guys!
Blessings to your uncle!
Good luck for your uncle. It's why I planning to donate my organs after I pass. 🙏
I teared up when Noah said that the heart surgery was "bad" and when he said "I was missing my family all day long." My heart aches for this wonderful kid and his family but they are all such an inspiration.
I know this family has definitely gone through their share of tears and heartbreak, watching baby brother go through so much. So happy he is doing well. Noah is such a sweetheart. Prayers and blessings on the donors family. Myself being a mom of little boys as well as teenagers, l totally understand the video game bond is huge in their relationships. Nice family.
This video is an example of the family members seriously helping out with the interview! Wow, do they know how to get things out of sweet Noah. What cooperation! Love these people.
This is one of the SBSK stories that I really relate to. I had several open heart surgeries as a child myself, and many more minor cardiac procedures as well. Although I never achieved heart health, the heart defect I was born with 50 years ago is today considered fixable. However, it wasn’t in my day and I always existed on the emerging cusp of technology. In fact, I still do. I too have known the lethargy that Noah’s Dad spoke of, and I’ve felt the renewed energy of the doctors figuring out a way to tweak something. And I’ve known peculiar awfulness of being bored and homesick in a long hospital stay. And because I’ve been there I must say I am so glad for you, Noah, that you had that transplant. I wish you many years of heart health. Thoughts and prayers to you & your family and to the family of your donor. God be with all of you.
Thank you so much for sharing your heart and health story. God Bless You!
Another adorable family , I felt tearful when his big bro did the science paper . Lots of best wishes for the future xxx
What a lovely boy and a lovely family. Bless them all ❤❤
Noah is so adorable. I wish my son would cling to me the way Noah does with his mama. 🥰
I will be 30 this May and I've always had an organ donor heart on my license. Seeing someone who is alive today because of that option is really surreal. What a sweetheart.
These are the sweetest siblings ever!! Noah is so lucky to have them! And they’re so lucky to have him! Simply precious.
it’s so sweet how Noah looks up to his older brother
Noah, you have a new lease on life and with such a wonderful family there with you, you’re very fortunate-you’ve got it all!
What a beautiful family. The bond Noah has with his momma is amazing. Keep up the hard work at therapy Noah! Your getting stronger all the time!
OMG HE IS PRECIOUS! I love his attitude, personality, his smile just everything! And I truly am amazed at how loving he is! This family is awesome!
What a beautiful family!!
This family is something special. You can see and feel their deep love, and it's so beautiful. What a blessing! This might be one of my favorite SBSK videos yet!! ❤❤
I can imagine with having low muscle tone and watching other kids explore the technology, that’s something he really desired to do! Remember the dad said at times he struggled holding the iPad. He has more energy now from pt and ot and he’s feeling validated in his mind and body! He’s happy and grateful for his family, the donor and their family, he’s happy to be a kid! And what a cute kid he is!
What beautiful family!! You can tell Noah is so loved!! He’s so polite and well spoken when he answers Chris’s questions 😂😂 and he so adorable with his mom! 😍 sending lots of good vibes and hugs to the whole family!
What a lovely family
Noah is such an awesome little guy!! His family is also the greatest, he has the best brothers and sisters ever. Wish them all nothing but the best ✌
He is loved.
Noah is such a sweet kid and his family is so loving so glad he got the heart transplant he needed
I have a cousin with kabuki syndrome. He is one of the genuinely kindest people I ever met.
Despite his condition Noah seems intelligent from what n how he answered questions .
So much love in this family.
Hugs n Cheers
My goodness. Chris, you are so fantastic and natural at this. Your flow of questions is effortless.
This little boy is incredible. This family is incredible. I love being able to see the love a family has for each other ❤️
Aww Noah seems like a smart kid and very sweet 💙💙💙 God bless him and his beautiful family 🙏🏻😭
What a lovely family, you can see all of them care for Noah so much ❤❤
Noah is sweet. Mom looks so young to have an one child moved out.
Mom is gorgeous. Stunning actually. I mean just absolutely beautiful. Reminds me of Erica Mena. 😍😍😍😍😍!!!!!
Yes, MashaAllah.
noah and his family are so loving and strong. every time i click on a new sbsk video i find a new inspiration and im so grateful.
My goodness, Dad is handsome. They seem like such a loving, sweet family. Noah is so lucky to be surrounded by such care.
Noah is a lucky boy to have such a wonderful family and his family are lucky to have a wonderful son/ younger brother.
He sure does love his game consoles
I love seeing in their relationship as brothers, They can still joke around knowing the full immensity, the full weight of the situation. Love is great between this family
He loves his mommy! What a wonderful family ❤️♥️
so glad to be this early to my favorite youtube channel ever. much love.
What a beautiful young boy, who’s obviously very loved by his entire family!
He such a sweet & cute little kid. His family all seem loving too 😊
Noah, you're so sweet & brave. Thank you for sharing your story.
Aw I love this family!! So sweet. I can see all the love they have for each other. 💗
this interviews are so heartwarming, noah is a blessing, he is a lucky boy with a beautifull family
It's inspiring to see how supportive this family is, and Noah's smile is infectious.
What a great family! Chris, I really appreciate how you phrase questions and comments to the interviewee so that they are engaged and involved in the discussion.
I think Noah is going to grow up to be one famous, adorable, and very well sought-after technology guru or anything else he sets his heart on. You could just see how his face lit up when he talked about technology. I love how his entire family shows up and supports him. With that level of support anyone can achieve anything❤
You have a beautiful family! Thank you for giving this interview. Noah is delightful.
What a wonderful family! I feel for this mother so much. I couldn’t imagine watching your child go through all that. I would never be able to leave my sons side either! He’s such a cutie too and his personality shines through! God bless him.
Such a beautiful family! He is precious. Cherish every second.
Prayers for all the family
Keep doing what u do and helping those that need it
Such a beautiful family. The love Noah has for siblings and mom was so heartwarming ❤️
This family is so loving and wonderful! Thanks for sharing …strong strong humans xox
Beautiful family!
Hi, Noah! I'm the youngest in my family, too. Being spoiled rocks! 😄 You're a real sweetheart. I wish all the best for you, kiddo! 💗 May God abundantly bless you and your family. Thanks for making me smile. 😊
As a adult diagnosed with Kabuki Syndrome you will never meet a sweeter soul each effected very differently. Thank you for sharing Noah’s life and family and bringing awareness to Kabuki. Noah you are a light 💚
Noah is a beautiful person! Thanks for sharing, Chris! You are the best!
What a angle of a mother
What a beautiful family! I adore Noah, what a sweet kid, and his whole family. Wishing them all the best!
Another great interview. I admire this beautiful strong family, just loving their kids.
What a lovely family!!! They must have so much fun together!!! Everyone is so great in their own way!!!
He loves his mom so MUCH! How precious is that! She is his comfy zone. ❤❤❤❤
What a beautiful family! Noah is a lucky kid to have so many siblings and loving parents. I'm so glad he was able to get a heart transplant and that it's helped him so much! 🙏
Wow. Such a supportive family. Noah is so cute! Loved this interview ❤️
Thank you for sharing! Love this beautiful family
Noah is an absolute champ; so easy to see the love in the whole family.
Thanks for these beautiful interviews.
Noah's mom has so much love for her kids you can see it so clearly in her eyes 😭❤
.It's the "No" he said when the big bro wanted to kno if there was more things to be loved by his lil bro, for me. 😂 😂
I am glad he is doing better. May he have a long happy life with lots of sports! Very cool family! You guys rock!
I love that all of Noah's family supports him, knows what's going on in his day to day life, and is active in his life. What a great family.
Such a heartwarming story, what a wonderful family.
This was so helpful to see. I had a baby this year and she was diagnosed with Kabuki syndrome shortly after birth. It’s helpful to see how other families go through life with Kabuki Syndrome. Noah seems like a fun kid and seeing this gives me hope that our road will get easier.
Noah is so adorable. Very articulate. Beautiful family! Thanks for sharing!
Noah is just so lovable! I’m so glad that he gets to be with his family at home now, and not in the hospital missing them!
his mother is beautiful in every way " I never leave ever! " what a amazing mother
such a lovely family and u can see how much Noah loves them Alnd how much they love him
"He's my best friend".
Spoken by a true mother.. 💞
I love this so much!! You are amazing!!
You can feel the love from this family! ❤️
You're so strong Noah! You and your family are beautiful!
This family is strong. It must be difficult. A lovely family and I wish them the best.
He is a fighter and strong kid. God bless him and his family. 🙏. Sending prayers.
So much love. This was inspiring. I might need a heart transplant one day. He looks like he is thriving. How wonderful ❤️❤️
What a beautiful and loving family; Noah may have challenges, but he's so blessed to have such a wonderful family.
Thank you SBSK for interviewing adorable Noah. 🧡
I hope that everyone signs an organ donor card. I have and my family and friends all know that my wish is to donate anything when it's my end time. You can save so many precious lives by doing so.
I'm so happy to hear that Noah has more energy now that he's gotten his new heart. I'm sure he'll continue to grow in strength every day. Bless you all!
This brightened my day. So much love in this family🥰
What a amazing story and young boy. I had never heard of Kabuki Syndrome. I think dad was right, Noah’s new heart is working just fine. May Noah and his family have a lifetime of joys.
Such a beautiful family !!!! Wonderful siblings and parents
I would love to see some more update videos of people you’ve interviewed years ago to see how they’re doing now!
What a sweet family . Noah is a lovely little boy . His siblings are so loving towards him , I think Noah and his older brother have a special bond great . Dad’s great ! Mum is just amazing! Mum’s so devoted to her youngest . The youngest is always the most spoilt ! Lol!
When he said he loved his mom, omg so sweet ❤
Bless u Noah he’s such a sweetheart! What amazing family
Awh, lab and his entire family is awesome I’m glad they share$ their story I find them to be relatable. I’m glad he has energy now that he had the transplant he appears to complete his family.
I find it amazing that we can probably all relate to him to massive amounts despite this perceived difference. Personally, as an autistic person, I can REALLY understand the 'I don't know' answers to open-ended questions. So-called "Normal" people ask very difficult to answer questions sometimes. We should all ask simpler questions! Noah seems like such a sweet, strong kid that has coped with so much and took it in his stride. He's a brave and inspirational guy, I think we could all learn a lot from him :)
what a bubbly personality!! if noah can see this then tell him that he’s an amazing person 🤗💖
I know he is hard to understand, but I love how you have to ask the questions a certain way, and how soft spoken he is, and well mannered he is too!
Hes so Adorable and Cute.
Noah is absolutely lovely ❤
This is such a beautiful loving family.
Epic video! I loved this video! Every second of it!
Surrounded by so much love from his siblings and parents.🧡
It's so refreshing to see a channel on CZcams that is nothing but positivity.
What a joy this family is!
Love and nothing but love for this little boy and his family 👪 💙,
What a precious family!
This family is so beautiful