Cornelia de WHAT?
ฝัง
- เผยแพร่เมื่อ 10 พ.ค. 2019
- Join us for a discussion about Cornelia de Lange Syndrome, how it’s impacted our lives, and an inside look of the Syndromes symptoms, characteristics and more! May 11th is international CdLS Day, come celebrate our sweet Sebastian!
My niece has cdls and she has proved so many doctors wrong and fought for her life a few times. She uses sign language to communicate and started walking just before her 5th birthday and now is working on potty training:) She is stubborn, strong, determined, and the sweetest little bug bug ever❤❤
Lombok
Thank you Samanta!!!!!!
Dice usted que tiene una sobrina con esta condición y que los médicos se equivocaron con lo que pronosticaron? no señora, no se equivocaron, los equivocados son los padres que forzosamente someten a estos niños a cirugías a dolor y sufrimiento a sus hijos Por el simple berrinche de querer ser padres.
Cómo es que se equivocaron con su sobrina? si ni siquiera puede ir a orinar sola. estos niños desafortunadamente Nunca van a ser normales
I'd love to hear an update!!❤
I have cdls and I just graduated high school and have a full time job
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That's amazing to hear. I hope Sebastián has the same experience.
@@joanbaczek2575 you can have mild, or severe. I have the mild one.
Also a life update: I’m getting engaged next month and I’m almost done with college.
Yes I really hope sebastion can do all the amazing things I get to do.
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What a BLESSING YOU ARE!! Congratulations on Graduation
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what a remarkable family, Sebastian is so blessed to have such loving parents. I would love to hold this beautiful baby❤
Now when google CDLS his picture does come up. I just love this little family! ❤❤
Just the love this family has is nothing short of remarkable.
"Seeing him get intubated..".. awee. As an ICU RN ( not peds) , my heart skipped a beat...You are amazing people..
My cousin was born with CdLS on October 10, 1998. She has the same nose, eyebrows & the same beautiful head of hair 😁. She will be 22 this October. She is non-verbal but has learned some sign language. She has been to summer camps and she had a great time. She is definitely short on stature (but to be honest, most of my family is naturally 🤣). She has one side that is more developed and her one leg is shorter so she has shoes made special for her. Despite all this, she is so sweet and loving but shy until she gets to know you. 😁 Sophie is the diamond in our family crown & she couldn’t be more loved. 💕💕 I will enjoy watching Sebastian’s progress 🥰
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This is beautiful thank you ❤
I love the love that Sebastian has within his family and beyond.❤
That was beautiful. The love the whole family showers on Sebastián is touching. God Bless you all. May God do more healing on your son. Stephanie, you are an amazing woman. Geo is a very special dad, seeing the love pour from his eyes as it does from you.
Thank you so much for sharing! Your love for your son is beyond the moon.
I so loved watching the love that Sebastian has from his chosen family , I have looked after a special lady with sever CDLS for 10 years now she is 42 years old and every day I see her she brings light to my life I am sure Sebastián will shine on your life too.
Beautiful boy! I have a 23 year old brother with classic cdls who constantly defies expectations and the things doctors think they know. You have a lovely little boy!
Mother of CdLange -son in Finland. Aapo died at the age of 22. This video was wonderful- so many memories❤️All The best to your family❤️
YOU have a wonderful loving family and Sebastian is a beautiful wonderful gift from God. God bless
Omg so cute Sebastian!!!❤️❤️❤️
My sister has Cornelia de Lange too she is 11 now and she has improved a lot 💜🌺 I send love to your family
Really enjoyed watching Sebastian & his loving parents & family!
Y'all are amazing. May God continue to bless you with His love, mercy, endurance, wisdom. 🙏💙
I worked with a young gentleman for almost 10 yrs who has CdLs. He's one of the most important people in my life. I don't work with him anymore but i do take him and do things with him often. He has brought me much joy and taught me many things. He's a joy to be around and we always have a great time together. He also has a friend who has it. And you are right there is a wide range for people with it. The gentleman I work with is verbal but his friend isn't. He can write and read some words but she can write a whole letter. Each person is unique and special in their own way.
My daughter Nicole was born with Cornelia De Lange syndrome. My husband and I had NO idea, we had alot to learn! Nicki was 2 pounds at birth. She is now 33 years old, and doing very well. She is mentally about 12 and emotionally about 7.
God bless you all!! We belong to the CDLS FOUNDATION. They have helped us alot! ❤
I think he is just delightful and will lead a wonderful, happy life.
Sebastian’s eyebrows are definitely on fleek❣️❣️❣️❣️❣️
He is so loved. So beautiful and precious.
His eyebrows, though! Bless his precious heart!
Love it!!! Love Sebastian. Amelia was misdiagnosed with CDLS in the beginning because of all the hair she had, her eyebrows, cleft palate and low birth weight.
We were categorically told not to google anything. I still did! Haha.
It freaked me out, just like any new mom. But here we are 17 months later, with the right diagnosis (9p deletion) and loving life and learning every second of the way!
I thought there would never be a baby as cute as my boys were when they were young. But, Sebastian lives up to that. He is the sweetest and cutest baby ever!! Love your posts on Instagram!!
God is with this sweet boy and his whole family. ♥️🙏🏼🙏🏿🙏🙏🏻🙏🏾🙏🏽♥️
I love this! My daughter has a genetic mutation called cdkl5 and I can relate to this so much! I love seeing someone posting videos of special needs kids! Not enough people do! So thank you!
Sebastian is very cute, and gorgeous looking. I'm so glad he was born into a very close and loving family. I've been following his videos, but missed out on this one. I have to say he brings a smile to my face. A beautiful family.
He’s a gorgeous little boy. So cute. He’s so loved by everyone.
May God Bless this Baby boy All his days,💜💜💜🙏
He could not be any more precious as he was at the end of the video. He sure made me smile!
Very few people in the world can say they know what you are going through. Our CDLS son is now 2. He started day care recently and loves it. He interacts with the other children, he makes happy sounds on his way there. 2 years ago my wife and I would never have believed how 'ordinary' our lives are today. In his case we thought 'special' meant never ordinary, ever again. But we were wrong :)
I've never seen this before! Such a loving supportive family surrounds beautiful Sebastian... ❤️
GOD bless you little one. May the angels always watch over you, guard you, protect you, and fight for you!!! May GOD use your precious life in a mighty way. Every life has a purpose, you are going to touch many hearts like you touched mine!!!♥️♥️♥️
I agree his eyes and eye brows are the first beautiful feature you notice on him♥️♥️♥️♥️♥️ gorgeous!!!
Such a beautiful strong little boy. He is a beautiful gift from God😊You are amazing parents and I think it is wonderful that you are sharing your lives and what it is like to learn to love and raise a baby who may not seem perfect to those who don't know much but to me he is absolutely gorgeous and his little laugh is precious. So glad that you have such loving family to support you and in return what Sebastian gives to each one of you and us. 😊🙏🏻💙💜
What a beautifully close & loving family & excellent introduction to CLDS...God bless this family & all families with disabled children...
Awe He is A Doll,💜And that beautiful Elvis Presley hair,🥰😇
He is absolutely precious 💕
Such a beautiful video! Sebastian has such a supportive loving family and it shows via internet.
Beautiful family and beautiful baby! Seriously he is so frikin handsome!
I love that you included the extended family, he is such a loved baby 💕
I love the last part. Enjoy the the journey. God bless you for sharing your story with us. ❤️🙏🏽
This was beautifully presented
Love y’all bunches 💙💖💙🐶🦜
Little Sebastian has a beautiful and loving - he lucked out with his parents who will be great advocates for him. May God bless this family. ❤️🇨🇦
A beautiful boy who has the strength of his family helping him to live his life to the full ❤️ x
My friend has CdLS, he’s 13 and weighs 50 pounds. He’s non verbal and uses an iPad to communicate
"Reach out, find support and enjoy the journey"...love that!❤
Sebastián is a gift from God. Bless his heart❤.
Omg...i saw the vlog at the first time " Sebastian very cute baby boy " ❤️ love for u guys as a parent ( awesome ) 👍💝
WoW such a beautiful family!!! GOD won't give you what is not for you and you can't handle. GOD blessed your family with HIM cause he was meant to be here, and no one in the world, could love him like you do. We all love GODs children every life is precious but your heart was made for him and his heart was made for you!!!
So, God decided to let my twins die? Really?
Thank u for sharing your story. I am so attached to your beautiful boy! My name is Stephanie and I searched my name and found u! I subscribed immediately and I can't stop watching ur videos thx y'all
He is beautiful and perfect! Bless this precious little boy 💙
Bless your whole family ❤️ you all are beautiful people with Sebastian being the most beautiful ❤️ thanks for sharing your life with us💯
Que bello cuánto tiempo aguantando tantas cosas por las que a pasado ese chiquito tan bonito que parejita tan hermosa con ese chiquito Dios les ayude en todo. Momento
Thanks so much for sharing this wonderful vlog. Sébastien is a wiggle worm last couple of times. So cute. Sébastien has wonderful parents.
I have noticed since his heart surgery how he has stated moving and talking and smiling, he his precious and ya'll are the best parents.
I love watching your videos. Sebastian is such a beautiful boy.
What a beautiful person Sebastian is! He doesn’t have a disability, he has his own ability. I just love how much your family adores every inch of him. 💗
My son in on the spectrum. He’s my youngest, and only boy. Being a Mom of a differently baked child has been such a blessing. My eyes have been opened to a world that I never knew existed. I do understand the loss of dreams and aspirations that we once had for our sons. But I also feel the same way you do; I would feel the loss of my son as he is, if he were different. Sebastian is going to blow you away during his beautiful lifetime. He’s so precious! Enjoy the journey and find the smiles where you’d least expect to find them. 💗
Sebastian is adorable and he has wonderful parents. I love his hair. You all will have many adventures.
Beautiful baby boy❤. My granddaughter has CDLS. She had to be delivered C-section as well. She was breach. I think they are precious and so loving.
my prayers go out to you!!!! you see I had a child with disabilities she was born in 1982 way back but we did not know what to expect so we went day by day she did pass away at 4 and a half but we were able to give her alot of love !! your story really touched me deep down.. I think God gives to those who can handle and learn from. you are fantastic parents and have a great support group {family}. I love your vlogs just watched the series about his heart surgery,, Glad to know he will be great with parents like you all how could he not!! it is tough sometimes but never lose your faith!!!! love you guys !!!! take care
El AMOR lo supera todo! Dios los bendiga familia hermosa!
It's amazing how all these gorgeous babies look so alike. 🥰
You are amazing parents sebastian is beautiful ❤❤❤❤ you are warriors mommy lioness daddy lion with you in his corner 🙏🙏🙏🙏god bless you all
God bless you and your beautiful baby boy! Your family is amazing!
I found your channel by accident and I absolutely love your family, Sebastian is a beautiful happy little boy and You are a great mom and care giver , I give you so much credit to be at your your age and to have to take care of a special needs child it is a lot of work ,and it's a lot of love, I worked with special needs children for 30 years for the school department and they are the most special children in the whole wide world I grew up with special needs in my family so I knew the INS and outs of things that needed to be done and how much love they give and how much love we give back to them ,I am so grateful I found your channel. I have 5 children all grown up now although none of them are special needs in the sense where they need constant care one of them has a ADHD and aspergers But a mild form and social anxieties even though he works with the public and does amazing you would never know that he had any difficulties hes almost 24, it still was a challenge when he was young and growing up so I have to tell you you are my hero you do amazing with Sebastian much love to your family
Steph I'm home recovering from neck surgery last week and so many of your videos are on my scroll, ones I have not seen so this is me arriving late to the party lol. Feel better lady!!🫶🏾
Woah. I was watching this and heard my doctor- Dr Tinkle! He’s a great guy.
What a sweet baby ❤️ Great vlog. Thank you for sharing ❤ New sub!
New to your channel and I’m just gobsmacked at just how wonderful you and your family are. Sebastian is a darling boy and he was blessed to have you both as his parents. Much love to all of you. ❤
He belonged to your family , the man above knew who would receive this beautiful baby with open arms .
Amen 💙
Adorable little boy 👦 lots of hair so cute & tiny love the name Sébastien 💙 May God Bless
Sending you lots of love Sebastian ❤️
What a beautiful video ❤️
Beautiful family 😍 such a great mom and dad ❤️
What a wonderful family.
What a beautiful family!❤God bless
What an adorable little boy.
Beautiful video ♥️
I love the way his grandpa says his name! Three generations of that face!! 🙂🙂
You two are doing very well with your baby Sebastian is awesome I love the facial features he has and how he uses them he isn't adorably loving kid and you too you are great parents you are really good I don't know what your age if I would have been able to hold together like you have I pray for him and I pray for you both of you but you two are doing great I love watching him so much he's an awesome baby he really is you two are very very strong I know sometimes it didn't feel like it but you are you're very strong I'm impressed he's going to do well all of his life with you guys God bless you guys
Beautiful beautiful family. ❤️❤️
You are amazing best parents!!!
He is really a gorgeous baby boy...
They told you over the phone 😔
He is so cute 😍 the love is real 😍
So sweet! You have a cute and adorable baby boy! 💙
Très belle vidéo 🙏🏻❤️❤️love
I love Sabastian so much. I truly wish I could meet him. And give him a big hug and a kiss. God bless you little Man Linda in Texas loves you and prays for you everyday.
Nice to hear daddy’s side💚
His grandma loves him so much 😍
He is absolutely beautiful…your family is blessed ❤️
Aww this video just randomly came up in my feed and his hair is so adorable!!!! I'm a sub already but his hair really came out in a FOHAWK! lol he's so cute! He does look SO much like Gio! He's just gorgeous.. the beginning pics are so scary with the tubes and discoloration. He was so small. I'm so glad he's ok and so strong. He's just come so far! Great parents help too!!!!!
Genitori meravigliosi. Che il vostro futuro sia radioso
Great Grands! Everything will be great!
LOVE THIS EARLY VIDEO❣️
what a lovely family
Sa prinder te mir dhe te dashur ju bekoft zoti
He is absolutely gorgeous ♥️♥️♥️
He’s absolutely adorable
Baby sab ❤❤❤ he hasnt changed much with looks only grown 😂 but hes so gorgeous and precious ❤❤❤
Wow he's so adorable looking like a rockstar punk with his hair style eyes eye lashes 🎎💎🥁
He's precious!🥰