Have the medical community tested Sebastian’s brain waves during certain activities? It would be so interesting to know how his brain functions. Love to y’all💕
They have! 💕🙌🏼 They describe it as sometimes the brain waves are straight lines, which means he’s processing things clearly and other times (more times then not) his brain waves are kind of “zig-zaggy” and that’s when the disordered parts of his brain are taking over and things aren’t as clear. But it sure seems as he gets older he totally understands more. 💕
Hi 👋 Stephanie, Gio, Sebastian Nala and Zeus. I see Sebastian is getting taller, more responsive. I love his side eye and direct eye contact. His little giggles is contagious.
@@stephaniegeorge I agree, Steph! I am seeing Sebastian exhibiting so much more understanding after his heart surgery! I think he is definitely understanding a lot more lately! ( :
@@JESUSCHRYSLER5512 stephanie deliberately wrote the title like that, it wasn't 'unfinished' or in need of correction. She wrote it like that, because in the video she was answering multiple different questions that fitted that starter of 'will Sebastian (insert rest of question), not just about his understanding and processing. Even if you thought someone (Stephanie in this case) truly made a mistake, there's far nicer ways of going about correcting them, than the passive aggressive way your comment was written. Or even better, politely ask the person if that's what they meant to write, instead of assuming you know better, in case it's a situation like this where actually your assumption was wrong. It doesn't cost anything to be nice. Ps - My apologies if that wasn't your intention with your comment, that's just how I felt your tone was suggesting, though I'm aware that tone isn't the easiest thing to convey online
I'm a mother of 6, grandmother of 9 and great-grandmother of 3 (I'm 67) and I am soooo impressed with you as a mom. God definitely gave Sebastion to the right family! Nobody's perfect , but you seem to be as close as possible. Enjoy your little one for the things that he can do or be, that's all that's important .God bless!
I often rewatch this one….😢 I’m a stay at home grandmother of two beautiful girls! We have custody of them due to drugs. The baby was born with nas and when I’m feeling upset due to having no life besides the kids you bring me back to being grateful for all I do have! I love your family so much!! Your amazing!❤
Thank you for all these answers. What I can tell is that Sebastian absolutely knows the language of love that surrounds him. He is perfectly precious as God made him. You are all blessed to have each other!
You & Gio are really special parents to Sebastian and his grandparents and aunts. There is a lot of love in that home and is shows in every video. Don’t forget to give Sebastian that hug and kiss from me! You are all loved and very much respected! Oh my gosh, that video of Sebastian at 2 1/2, so cute!!! And the one at 1 1/2, that cute little voice and that adorable face!❤
I am just absolutely amazed at what a beautiful soul this mother has. You can tell when she interacts with her son how much she truly loves him and even just watching her talk about him she lights up. Its such a beautiful thing to watch her videos. Things like this give me so much joy and remind me what truly matters in life. God bless those parents! 💕💕
I totally relate to you. I had a daughter that was severely autistic. I too felt isolated because I stayed home with her 24-7. But I wouldn't have changed a thing. She passed away at 32, now my angel on earth is now at home in heaven. I miss her every day. God bless you and your family.
You’re amazing, my nighttime bedtime ritual is RUclips. You came up in my feed and you are just so sweet and your videos are uplifting and just great. I wish you the best health and happiness from NJ, much love and support. You’re a kick-ass Mom!
And you’re a TERRIFIC MOM! My daughter is 20 and in college. We had a very bumpy road that I won’t go into, but please, PLEASE know you’re an AMAZING PERSON and MOM
@@stephaniegeorge my daughter is 20 now and it’s so cool to see all this information/content (I’m before RUclips, lol!) so I love to learn about everything, so much information on things I would NEVER have known about. Way back when it was time to choose “careers”, I chose chef, smh. I would LOVE to be a geneticist or virologist, but I believe the “career ship” has sailed, but that’s okay too! 🙂 Please keep posting, I follow SBSK as well and have learned so much!
Sebastian added his smile at the end and he has the sweetest smile. You are the best mom, Stephenie, and I know Sebastian will reach his full potential with the parents and family he has around him. He is surrounded by love and patience and that is a beautiful thing. May God bless you all. ❤️🇨🇦
As a mother of a severely disabled child who passed away at age 34 years old, I'd like to say what my experience has been. I waited nine years to have another child and had another child five years later. I'm so glad that I was blessed with my younger girls. They are the most compassionate and kind people. You are a sweet, lovely young mother. Pray on this and you will find the right answer for you . Sending gentle hugs.
I would think too as your children grow to adults and you get old3r it's great to have healthy children too talk with, support and who understands and will be there for their sibling when you can't. Though I wouldn't judge a sibling who doesn't want to care for their sibling when their parents die and still good to have someone who checks they get good care.
God gave you Sébastien because you and Gio are the perfect parents for him. I love tuning in and watching him. He is beautiful. Thanks for sharing him with us.
I have seen great strides in Sebastian after his heart surgery. It appears he is stronger and with continued therapy I bet he meets many of his goals. Each goal, no matter how small, is HUGE for him. I am certain he will continue to make great progress.
I did not know my daughter had Cornelia De Lange syndrome until she was born either. Also, there are degrees of severity of the syndrome, like Downs syndrome. As I said before, my daughter is verbal and lives in a group home for disabled adults. She's pretty self sufficient, she is 36 years old. Mentally about 12 years old and emotionally about 3 years old. She walks. She reads and writes at about a 7th grade level. She eats all foods normally. I'm so glad I found this channel!! I also watch Freya!! 🥰
@@stephaniegeorge 🤗 Hi Stephanie!! Thank you so much for bringing awareness to CDLS!! Sébastien is absolutely amazing!! I love your videos!! Sébastien is so cute! God bless you all!❤
@Delilah Hart Yes, it is great. Her major issues are behavioral and emotional. She is 36 years old. Emotionally, she is about 3 years old. She reads and writes at a 7-8th grade level. She has a lot of temper tantrums and some self injuring behavior. Thank you!! ❤️
Hi Stephanie 💖! Just a humble thanks for allowing us into your life! I laugh and cry with you. I believe Sebastian will continue to do amazing things! Because you are an amazing! I will continue to keep all of you in my 🙏🏼... especially to see Sebastian in those cute yellow Crocs! 💛😍 Love from Minnesota.☃️
You are such a great educator Steph. I appreciate you taking the time to share these things about Sebastian. Im sure all of us followers learned something new. Much love to you all.
I have Marfan Syndrome, a connective tissue disease that causes physical deformities to my joints, muscles, bone, blood, organs, hair, skin, eyes, and blood vessels. I’m falling apart but man am i happy to be alive and just you being so diligent on not letting this stop you guys is wonderful to see. Way to go momma! So, speaking of the feeding tube, I have gastroparesis and I was 80lbs a few years back. To gain weight and get mega nutrition off a tube, TPN is something they give via the IV and it is amazing what it can do. It isn’t as common in America as Europe and Australia, idk why, but it may be an option to know exists if you find yourself in a rut with gi woes and need some freedom a g j tube etc. My dad was born with flat feet and hindfoot deformity, so in turned ankles, wore leg braces like Forest Gump. They thought it was Spina Bifida for awhile, but he carried Marfan Syndrome which he gave to my brother and I. He ended up walking it just took a super long time but the braces helped a lot. My son has the same issue he did. My rib cage and heart/vascular organs are deformed but I did just get mainly the internal organ problems, and you just learn to take each day as it comes. Whatever ability you get is a gift, so I hope maybe walking will come with time for him. I have Asperger’s too, I have a niche of specific areas I’m super good at and smart about. But others I struggle immensely and am behind the curve. I wish I could have had a mom as caring and involved as you. Sebastian is a very lucky guy!:)
You sound like a lovely person & have overcome a lot. I’m sorry you didn’t receive enough love & support growing up. Steph shows how important it is to have a dedicated parent. My very best to you!
As a woman that cared in the pass for a lot of children in my family and for friends I think you’re doing an amazing job caring for your son. Also you care for your pets and that speaks to my heart as well. Continue blessings.🙌🏽
Just seen the clip of Sebastian when he was a few years younger, he's nothing short of adorable then and now. I love all the little noises he makes and especially adore,his smile, I just melt every time, he's so gorgeous. All this is due to you're amazing care, love and devotion, you are very special Stephanie ! Xxxxxxxx
I loved hearing Sebastian's voice. It so sweet and beautiful to hear. Thank you for sharing Sebastian and your family. You're both great parents and I'm happy to know you all...hugs from Arizona...:)
Thank you so much Steph💕💕🌸Sebastian is so darn cute & he has the most beautiful complexion🐼🥰You are one special person!!God has blessed you so much💚🌟Lol…🌈💫🐻❄️🌺
I just fell in love with Sebastian. I’m a new viewer here. You are so articulate and so sweet. You were meant to be his Mom and I am going to be praying for Sebastian to stay healthy and happy. God is so loving and I believe he knew you weee the perfect mom for him what a blessing. ❤
Thankyou for a very interesting video. I have not been following you that long. I think Sebastian has wonderful parents, you are truly blessed with your boy. I am in England. God bless you x
I think there's so many variables and unknowns about Sebastian and all the unknowns about his progression that that has got to be the most frustrating thing of all. But one thing I'm sure of is that God placed him with the best parents he could ever have had. ❤
Sebastian is precious. Thanks for educating me on CDLS. I know parents and caregivers also need encouragement. I wanted to say, your doing great. New subscriber.
We all wake up on any given day either in a great mood or not greAt sleep we often have a horrid day. I don’t have questions ,I feel like you share so much that eventually you will answers us. Seeing Sebastian with you is just lovely . He has an adorable and infectious smile. Love and hugs from Sydney australian
Sebastian is quite aware and intelligent considering his difficulties. He's just such a sweetheart. Good job mum and dad on raising such a beautiful boy. Lots of hugs from the UK
Just found your channel! You are an amazing mom and could be a poster child for a parent with a child with disabilities showing how to love and accept the situation you are in. Your love and care for Sebastian is so apparent. He is so cute! I love the advent of YT so moms as yourself can introduce their children with disabilities to educate others. This will help build tolerance for those who are different. Adults or children. Good on you, mom and dad! Love your channel
He is so beautiful! Your family love is awesome and very much appreciated! That's the way to show you have confidence in him and your selves. My mom when I was in high school babysat for very dear friend of our family, her child had the same heath issues. We all loved Jennifer as our own sister and child. Being a part of a loving family is some of the best medicine a beautiful child can receive and make life even better for them. No matter what Sébastien, knows he is loved and will never stop trying to live his life with everything he has in his soul! It shows how much he can do now! I thank you for standing by him, giving him all your love and support ❤!!! The best of it all he knows LOVE!!!
My favorite videos are the ones you sing to Sebastian. I can see the transformation cross over his face. He knows who’s singing and he absolutely LOVES it. You can see heaven in his face. 🥰
Even his occasional sass, is adorable.😍 I'm so glad that your videos found their way, to my timeline. You have such a beautiful voice, Stephanie. What do you think Sebastians favorite song, is? And movie? Love, LOVE you guys.
Cars was always a favorite at our house, too. My kiddos were obsessed, Awe, goodness. I wish I could carry a tune! My kids would've run for the hills, if I tried to sing to them.🤣 Are you familiar with the song Rainbows, by Casey Musgraves? Her voice reminds me, of yours. I would LOVE to here you sing that, in case you ever take any requests.;)
I am Richelle Davis with Cerebral Palsy from South Africa. I am really very Blessed in that my IQ was not affected at all but it was literally seconds that made the difference. I just want to say that you are truly a beautiful Soul, remarkable Dad. I love how you talk to him, completely "normal" cause that's how he should be viewed. My parents have been wonderful and you remind me of a young version of them God Bless you both and your gorgeous boy🙏
I've watched Sebastian grow over the last year, when he's in his chair and when mum holds him. Then Gio comes and does his beautiful boys exercises and Sebastian goes back to being a tiny precious gift. Love you all. X
I really enjoyed the Q&A🤗 as always. I’m glad to have seen Sebastian at the end of the video. He’s such a cutie. I just want to hug him 🥰. I do watch Freya’s Lucky Arm channel. I like watching her scoot herself around. I pray 🙏 that Sebastian will one day be able to get around … his own way. ❤ you sweetie 😘.
You are a great advocate for Sebastian a great great mom often being someone’s full time caregiver weighs a person down and there is something about that handsome little devils smile that just melts my heart
Stephanie, I just want you to know that your channel has helped me in so many ways. I live alone, after raising 5 children, and I seriously hate living alone, but children grow up! 🤷🏼♀️ You have literally become my online family. I look forward to every video! I even went back and watched every video you posted. I feel so thankful to have 'accidentally' found your channel. I had followed you on Instagram for awhile, but I didn't know you had a channel on RUclips! I've loved you guys from the beginning. Thank you for sharing your family for us! All my love to you, Gio, and Sebastian! 💙❤️🩵🐕🦜 ❤🩷🧡💚💙🩵💜🫶👨👩👦🤗
I know what you mean Lori!! I am an empty nester and a widow and I look forward to each new video!! Sebastian and his family bring immeasurable joy to so many viewers!! 🥰
It's tough to transition from being full time needed mother to being alone. It's the hardest emotional rollercoaster..especially if you have not one other family member or friend.
Stephanie, you nailed this Q&A! I was so intrigued from start to finish. And just when I didn’t think I could love him anymore, I’ve learned how truly unique he is. Sebastian beautiful, you are one in a million and you bring smiles to so many people lives! ❤
You are such an awesome mom. Sebastian is very lucky to have you and Gio. It's also very enjoyable to listen to the way you explain your life with Sebastian. Thanks for keeping us so informed. I wish you all good things.
Awww Steph I’m so glad you and Geo have a date night that is so special you need that. I can see Sebastian is trying to communicate and that smile says a lot ❤
You’re amazing! It must be so hard to deal with so many unknowns with a child with such a rare syndrome but you’re really figuring it out and being realistic about things and what he can actually do, here and now.
Hey Stephanie Sebastian and Gio! I've only been subscribed for a couple months but I absolutely love ur family!!! I've been watching all ur older videos too! U are such an amazing mother!!! Love u guys!!
Sebastian is one popular little dude! Don’t underestimate the impact both you and Sebastian are having raising awareness of not only his syndrome but also bringing a sense of normalcy to raising a child with special needs. I love that you answer questions about Sebastian’s future honestly and candidly. It can’t be easy not knowing what Sebastian may or not be capable of in the future but you show that his value as a human is not measured by what milestones he achieves and I think that is something we can all learn from!
You are the most remarkable person. For you to have to keep things together for you, Geo and Sabastion is wonderful. I really enjoy being able to look into your life with all the challenges you face day to day. Keep up what you are doing it's so incredible.
When I was a stay at home mom, it was a very big blessing...but I did miss adult communication and interaction. You guys are so smart to prioritize your relationship with each other by making room for each other. Sebastian definitely seems to understand quite a bit, but you can see the wheels turning when he's processing. Having children with autism and working with special needs kids, it makes me so happy to see you offer different stimuli. My friend who had an older brother, that was born with something similar to CDLs back in the 70s, the experience with their family was so different. Her mother would lay him on a blanket and just leave him there for hours and hours. And honestly I think that's where my love is special needs children and people in general began. I always felt drawn to interact with him. I'm just so grateful for your Channel. Your videos genuinely bring me joy. You are a wonderful mother from what I can see!
Stephanie, thanks so much for another great video. I am not sure if your realize that you are not only educating people about Sebastian’s syndrome but more importantly, you are sharing the overwhelming love that abounds in your family. Every time I see your family together and their outpouring of love for Sebastian, it makes my heart happy! ❤
Amazing mom! Thank you for the information, it can't always be easy. Sebastián is an Angel. It's not often that we are blessed to actually see an Angel! Thank you for sharing him with us.
It's not crazy to feel resentment for your husband to be able to go to work while you stay home, because I loved working and meeting different people and being able to just get out of the house; after breaking my back and neck, I'm at home all the time and it sucks after awhile. It's a great thing that you and your husband can talk and make your differences work because that is how my husband and I treat certain situations and it works well with us. Prayers for you all always and definitely for my little handsome Sabastian!!!! Prayers are always with you all. 🙏
This was so wonderful of you to share all this information. Sometimes it’s hard to put in words to inquire information without it sounding disrespectful.
You're amazing. This is the 1st I've ever seen on your channel. Sebastion is one lucky little guy when it comes to his parents. I look forward to following your jouney. The whole world needs love more than ever and you are a chapion every day for a very special little boy.
Hi Stephanie. Like many others I had never heard of CDLS before your you tube channel appeared before me but I am so glad it did as I can see all the love you,Gio and the rest of the family give Sebastion and love goes a long way in any healing process.Thank you and take care xx
Thank you so much for taking the time to answer all those questions, Stephanie! This was very informative. I loved seeing those videos of Sebastian from when he was younger! So cute! He is blessed to have you as his Mom, and Gio as his Dad, and be in such a loving family. Sending you all my love and hugs, I love you guys! God bless you in Jesus’s Name 🤗❤️🙏🏻🥰
Hello, this is my first time seeing your channel. I appreciate you taking the time to share your experience with your sons rare disease. I truly believe that candid communication , as long as it’s delivered in a kind, respectful manner, is the best as well. I believe when we open up our minds to learn about one another, and our individual traits, we may see differences but also see the similarities. Subscribed 😊
I know this is a year old but I wanted to say that you are a wonderful spokesperson for CDLS. It doesn’t hurt that you are beautiful! You are a role model for all parents with disabled children. Your life is forever changed and you just continue to rise to the challenge. It is so obvious that both you and Gio love Sebastian. And we can see that he feels it. I think that’s something we know his brain is processing just fine. Love is just everything in the final analysis.
Great video. Thank you so much for all of the information. Sebastian is just the sweetest little boy. What a lovely little family. Much love to you all ❤️👨👩👧🦜🐕❤️
Love your Q&A videos, Stephanie. I also love how frank, honest and loving you are with your relationship with Gio and Sebastian. You have a great support system, too. Not very many families have that luxury. Lots of love from me, a mom with a daughter w/Down syndrome & autism.
Just saw this channel last night. Sebastian is such a cutie pie,such a sweet boy. You and you’re husband seem like wonderful parents so loving. You are both blessed to have such a special child as is he to have wonderful parents who love him so.♥️✌️
You are so sweet to answer peoples questions like this. You do such a great job explaining things. You are educating others on his syndrome and that’s amazing. I too try and do the same with my son who has Down syndrome. In fact, 3/21 is World Down Syndrome Day! It’s a big deal in our house. In fact, I got a tattoo that’s “the lucky few” tattoo, three arrows >>> for 3 copies on the 21st chromosome and because arrows are pulled back before they soar. Which is the story of our life. Thanks again for sharing all you do!!
Oh my goodness...Sebastian at 1& 1/2, and 2&1/2 so adorable!! His looks have changed so much from a baby face to a big boy face!🤗 I learned more about CDLS in your video today so many thanks to you Stephanie!! Blessings!!❣🙏
Very interesting video. I like the question/answer format. Thank you for answering the many questions we all had for you. God bless Sebastian, Mom and Dad, Zeus and Nala!
Have the medical community tested Sebastian’s brain waves during certain activities? It would be so interesting to know how his brain functions. Love to y’all💕
They have! 💕🙌🏼 They describe it as sometimes the brain waves are straight lines, which means he’s processing things clearly and other times (more times then not) his brain waves are kind of “zig-zaggy” and that’s when the disordered parts of his brain are taking over and things aren’t as clear. But it sure seems as he gets older he totally understands more. 💕
Hi 👋 Stephanie, Gio, Sebastian Nala and Zeus. I see Sebastian is getting taller, more responsive. I love his side eye and direct eye contact. His little giggles is contagious.
@@stephaniegeorge I agree, Steph! I am seeing Sebastian exhibiting so much more understanding after his heart surgery! I think he is definitely understanding a lot more lately! ( :
@@JESUSCHRYSLER5512 stephanie deliberately wrote the title like that, it wasn't 'unfinished' or in need of correction. She wrote it like that, because in the video she was answering multiple different questions that fitted that starter of 'will Sebastian (insert rest of question), not just about his understanding and processing.
Even if you thought someone (Stephanie in this case) truly made a mistake, there's far nicer ways of going about correcting them, than the passive aggressive way your comment was written. Or even better, politely ask the person if that's what they meant to write, instead of assuming you know better, in case it's a situation like this where actually your assumption was wrong. It doesn't cost anything to be nice.
Ps - My apologies if that wasn't your intention with your comment, that's just how I felt your tone was suggesting, though I'm aware that tone isn't the easiest thing to convey online
I'm a mother of 6, grandmother of 9 and great-grandmother of 3 (I'm 67) and I am soooo impressed with you as a mom. God definitely gave Sebastion to the right family! Nobody's perfect , but you seem to be as close as possible. Enjoy your little one for the things that he can do or be, that's all that's important .God bless!
I can see a huge understanding of language from Sebastian. You have a miracle daily in him.
It's weird but I swear when Stephanie says good morning I swear I can hear Sebastian say it too
I often rewatch this one….😢 I’m a stay at home grandmother of two beautiful girls! We have custody of them due to drugs. The baby was born with nas and when I’m feeling upset due to having no life besides the kids you bring me back to being grateful for all I do have! I love your family so much!! Your amazing!❤
What a lovely mom and dad, with so much love to give! Sebastian is such a lovable little boy, God Bless you all! 😘🙏🏻🥰
Thank you for all these answers. What I can tell is that Sebastian absolutely knows the language of love that surrounds him. He is perfectly precious as God made him. You are all blessed to have each other!
You & Gio are really special parents to Sebastian and his grandparents and aunts. There is a lot of love in that home and is shows in every video. Don’t forget to give Sebastian that hug and kiss from me! You are all loved and very much respected! Oh my gosh, that video of Sebastian at 2 1/2, so cute!!! And the one at 1 1/2, that cute little voice and that adorable face!❤
I am just absolutely amazed at what a beautiful soul this mother has. You can tell when she interacts with her son how much she truly loves him and even just watching her talk about him she lights up. Its such a beautiful thing to watch her videos. Things like this give me so much joy and remind me what truly matters in life. God bless those parents! 💕💕
@Tuesday Sheyann I agree! Very nice of you to point this out.
@@divinetiming8422 Aww thank you for your sweet comment acknowledging my comment. I really appreciate it.
@@Sheyann_89 You're very welcome! ⚘
I totally relate to you. I had a daughter that was severely autistic. I too felt isolated because I stayed home with her 24-7. But I wouldn't have changed a thing. She passed away at 32, now my angel on earth is now at home in heaven. I miss her every day. God bless you and your family.
You are great parents. You do everything for Sebastian's well being. His grandparents are great too. Love you guys so much.
You’re amazing, my nighttime bedtime ritual is RUclips. You came up in my feed and you are just so sweet and your videos are uplifting and just great.
I wish you the best health and happiness from NJ, much love and support.
You’re a kick-ass Mom!
Thank you so much for being here!
And you’re a TERRIFIC MOM!
My daughter is 20 and in college.
We had a very bumpy road that I won’t go into, but please, PLEASE know you’re an AMAZING PERSON and MOM
Prays
@@stephaniegeorge my daughter is 20 now and it’s so cool to see all this information/content (I’m before RUclips, lol!) so I love to learn about everything, so much information on things I would NEVER have known about.
Way back when it was time to choose “careers”, I chose chef, smh.
I would LOVE to be a geneticist or virologist, but I believe the “career ship” has sailed, but that’s okay too! 🙂
Please keep posting, I follow SBSK as well and have learned so much!
Sebastian added his smile at the end and he has the sweetest smile. You are the best mom, Stephenie, and I know Sebastian will reach his full potential with the parents and family he has around him. He is surrounded by love and patience and that is a beautiful thing. May God bless you all. ❤️🇨🇦
As a mother of a severely disabled child who passed away at age 34 years old, I'd like to say what my experience has been. I waited nine years to have another child and had another child five years later. I'm so glad that I was blessed with my younger girls. They are the most compassionate and kind people. You are a sweet, lovely young mother. Pray on this and you will find the right answer for you . Sending gentle hugs.
Sending you so much love Tricia. Thank you for your comment. 🥺💕
I would think too as your children grow to adults and you get old3r it's great to have healthy children too talk with, support and who understands and will be there for their sibling when you can't. Though I wouldn't judge a sibling who doesn't want to care for their sibling when their parents die and still good to have someone who checks they get good care.
God gave you Sébastien because you and Gio are the perfect parents for him. I love tuning in and watching him. He is beautiful. Thanks for sharing him with us.
Sebastian seems to smile with true joy with his mother and father! He is absolutely gorgeous!
I too am a empath and I understand how you process life. I appreciate how good you are at educate us. You both are incredible people and parents.
Empath here yes they called me Clairevoyant bf Empath became the word.
Sebastian is such a lucky boy to have the best parents ever. Thank-you for taking the time to educate us. He is a darling little boy.🥰👍😊
It seems like he understands alot. He responds appropriately to things said and places that you take him. I think it's fantastic. He's so incredible.
I have seen great strides in Sebastian after his heart surgery. It appears he is stronger and with continued therapy I bet he meets many of his goals. Each goal, no matter how small, is HUGE for him. I am certain he will continue to make great progress.
I did not know my daughter had Cornelia De Lange syndrome until she was born either. Also, there are degrees of severity of the syndrome, like Downs syndrome. As I said before, my daughter is verbal and lives in a group home for disabled adults. She's pretty self sufficient, she is 36 years old. Mentally about 12 years old and emotionally about 3 years old. She walks. She reads and writes at about a 7th grade level. She eats all foods normally. I'm so glad I found this channel!! I also watch Freya!! 🥰
I love this so much. Hi mama!!!!
@@stephaniegeorge
🤗 Hi Stephanie!! Thank you so much for bringing awareness to CDLS!! Sébastien is absolutely amazing!! I love your videos!! Sébastien is so cute! God bless you all!❤
I'm glad your daughter is so self-sufficient.
@Delilah Hart
Yes, it is great. Her major issues are behavioral and emotional. She is 36 years old. Emotionally, she is about 3 years old. She reads and writes at a 7-8th grade level. She has a lot of temper tantrums and some self injuring behavior. Thank you!! ❤️
@@jewelhaines8842 how and what age did u transition her into a group adult home? did she resist the idea?
You are so gracious to share answers about your life and darling Sebastian. Thank you so much! Hugs.
Very well spoken 👏 Steph! You are one super 👌 mama!
Thank you for being so open and honest about your lives - good and bad. God bless you all
No questions… but what a handsome, smart boy, with amazing parents who advocate for him!!! Love everything about your family!!! ❤️❤️❤️
So wonderful seeing Séb today. He is so cute and he is so loved. As always thank you for sharing your blessing on you tube.
Hi Stephanie 💖! Just a humble thanks for allowing us into your life! I laugh and cry with you. I believe Sebastian will continue to do amazing things! Because you are an amazing! I will continue to keep all of you in my 🙏🏼... especially to see Sebastian in those cute yellow Crocs! 💛😍 Love from Minnesota.☃️
You are such a great educator Steph. I appreciate you taking the time to share these things about Sebastian. Im sure all of us followers learned something new. Much love to you all.
What a beautiful little boy. Those eyes! He’s got a big personality in there!
I have Marfan Syndrome, a connective tissue disease that causes physical deformities to my joints, muscles, bone, blood, organs, hair, skin, eyes, and blood vessels. I’m falling apart but man am i happy to be alive and just you being so diligent on not letting this stop you guys is wonderful to see. Way to go momma! So, speaking of the feeding tube, I have gastroparesis and I was 80lbs a few years back. To gain weight and get mega nutrition off a tube, TPN is something they give via the IV and it is amazing what it can do. It isn’t as common in America as Europe and Australia, idk why, but it may be an option to know exists if you find yourself in a rut with gi woes and need some freedom a g j tube etc. My dad was born with flat feet and hindfoot deformity, so in turned ankles, wore leg braces like Forest Gump. They thought it was Spina Bifida for awhile, but he carried Marfan Syndrome which he gave to my brother and I. He ended up walking it just took a super long time but the braces helped a lot. My son has the same issue he did. My rib cage and heart/vascular organs are deformed but I did just get mainly the internal organ problems, and you just learn to take each day as it comes. Whatever ability you get is a gift, so I hope maybe walking will come with time for him. I have Asperger’s too, I have a niche of specific areas I’m super good at and smart about. But others I struggle immensely and am behind the curve. I wish I could have had a mom as caring and involved as you. Sebastian is a very lucky guy!:)
You sound like a lovely person & have overcome a lot. I’m sorry you didn’t receive enough love & support growing up. Steph shows how important it is to have a dedicated parent. My very best to you!
As a woman that cared in the pass for a lot of children in my family and for friends I think you’re doing an amazing job caring for your son. Also you care for your pets and that speaks to my heart as well. Continue blessings.🙌🏽
Just seen the clip of Sebastian when he was a few years younger, he's nothing short of adorable then and now. I love all the little noises he makes and especially adore,his smile, I just melt every time, he's so gorgeous. All this is due to you're amazing care, love and devotion, you are very special Stephanie ! Xxxxxxxx
I loved hearing Sebastian's voice. It so sweet and beautiful to hear. Thank you for sharing Sebastian and your family. You're both great parents and I'm happy to know you all...hugs from Arizona...:)
You both are wonderful parents to this precious little boy.
Thank you so much Steph💕💕🌸Sebastian is so darn cute & he has the most beautiful complexion🐼🥰You are one special person!!God has blessed you so much💚🌟Lol…🌈💫🐻❄️🌺
I just fell in love with Sebastian. I’m a new viewer here. You are so articulate and so sweet. You were meant to be his Mom and I am going to be praying for Sebastian to stay healthy and happy. God is so loving and I believe he knew you weee the perfect mom for him what a blessing. ❤
CDLS really needs more awareness and your doing a great job of that, I look forward to hearing about your chat with Freyas mom, hugs to Sebastian.💜
Thank you so much for educating me! You are truly a great mom!!!
Exactly 💯
What a fantastic Mum and person you are. Very special lady xx
OMG I just love the baby videos of Sebastian, he is so adorable. Beautiful family❤️
You are a positive energy for people.. We all need it, not just your son... You are strong
Nous renforçons ces beaux enfants et leurs belles âmes ♥💪😘🇩🇿
Thankyou for a very interesting video. I have not been following you that long. I think Sebastian has wonderful parents, you are truly blessed with your boy. I am in England. God bless you x
I think there's so many variables and unknowns about Sebastian and all the unknowns about his progression that that has got to be the most frustrating thing of all. But one thing I'm sure of is that God placed him with the best parents he could ever have had. ❤
Sebastian is precious. Thanks for educating me on CDLS. I know parents and caregivers also need encouragement. I wanted to say, your doing great. New subscriber.
He’s so precious! You are an amazing mother ❤
You are doing a fantastic job raising your beautiful son!! I love watching and learning about Sebastian!!
We all wake up on any given day either in a great mood or not greAt sleep we often have a horrid day. I don’t have questions ,I feel like you share so much that eventually you will answers us.
Seeing Sebastian with you is just lovely . He has an adorable and infectious smile. Love and hugs from Sydney australian
Watching my favorite kiddo and his pretty Mom, while I work out!
Sebastian is quite aware and intelligent considering his difficulties. He's just such a sweetheart. Good job mum and dad on raising such a beautiful boy. Lots of hugs from the UK
Omg. I fall more and more n love with y’all!!! He is precious!! And he’s so blessed to have a mom and dad like y’all!!!
Just found your channel! You are an amazing mom and could be a poster child for a parent with a child with disabilities showing how to love and accept the situation you are in. Your love and care for Sebastian is so apparent. He is so cute! I love the advent of YT so moms as yourself can introduce their children with disabilities to educate others. This will help build tolerance for those who are different. Adults or children. Good on you, mom and dad! Love your channel
He is so beautiful! Your family love is awesome and very much appreciated! That's the way to show you have confidence in him and your selves. My mom when I was in high school babysat for very dear friend of our family, her child had the same heath issues. We all loved Jennifer as our own sister and child. Being a part of a loving family is some of the best medicine a beautiful child can receive and make life even better for them. No matter what Sébastien, knows he is loved and will never stop trying to live his life with everything he has in his soul! It shows how much he can do now! I thank you for standing by him, giving him all your love and support ❤!!! The best of it all he knows LOVE!!!
You are an amazing woman and mother. God Bless you and your family. We need more people like you.
My favorite videos are the ones you sing to Sebastian. I can see the transformation cross over his face. He knows who’s singing and he absolutely LOVES it. You can see heaven in his face. 🥰
I will enjoy this so much! Thanks for answering the questions Stephanie! Hugs for Sebastian from Chicago ❤ 😙
Even his occasional sass, is adorable.😍 I'm so glad that your videos found their way, to my timeline. You have such a beautiful voice, Stephanie. What do you think Sebastians favorite song, is? And movie? Love, LOVE you guys.
He loves the movie cars and he smiles any time I sing him anything lol
Cars was always a favorite at our house, too. My kiddos were obsessed, Awe, goodness. I wish I could carry a tune! My kids would've run for the hills, if I tried to sing to them.🤣
Are you familiar with the song Rainbows, by Casey Musgraves? Her voice reminds me, of yours. I would LOVE to here you sing that, in case you ever take any requests.;)
I am Richelle Davis with Cerebral Palsy from South Africa. I am really very Blessed in that my IQ was not affected at all but it was literally seconds that made the difference. I just want to say that you are truly a beautiful Soul, remarkable Dad. I love how you talk to him, completely "normal" cause that's how he should be viewed. My parents have been wonderful and you remind me of a young version of them God Bless you both and your gorgeous boy🙏
Would love to be able to connect with you another way to, as I have so much more I want to say.
I've watched Sebastian grow over the last year, when he's in his chair and when mum holds him. Then Gio comes and does his beautiful boys exercises and Sebastian goes back to being a tiny precious gift. Love you all. X
I really enjoyed the Q&A🤗 as always. I’m glad to have seen Sebastian at the end of the video. He’s such a cutie. I just want to hug him 🥰.
I do watch Freya’s Lucky Arm channel. I like watching her scoot herself around. I pray 🙏 that Sebastian will one day be able to get around … his own way. ❤ you sweetie 😘.
That was awesome, Stephanie. Great job! Looking forward to part 2.
You are a great advocate for Sebastian a great great mom often being someone’s full time caregiver weighs a person down and there is something about that handsome little devils smile that just melts my heart
Stephanie, I just want you to know that your channel has helped me in so many ways. I live alone, after raising 5 children, and I seriously hate living alone, but children grow up! 🤷🏼♀️ You have literally become my online family. I look forward to every video! I even went back and watched every video you posted. I feel so thankful to have 'accidentally' found your channel. I had followed you on Instagram for awhile, but I didn't know you had a channel on RUclips! I've loved you guys from the beginning. Thank you for sharing your family for us!
All my love to you, Gio, and Sebastian! 💙❤️🩵🐕🦜 ❤🩷🧡💚💙🩵💜🫶👨👩👦🤗
So happy you are here.
🤦🏼♀️I tried to fix my grammatical errors, but my phone is being crazy 🤪 LMBO! But you know what I mean! 😂😂😂
I know what you mean Lori!! I am an empty nester and a widow and I look forward to each new video!! Sebastian and his family bring immeasurable joy to so many viewers!! 🥰
It's tough to transition from being full time needed mother to being alone. It's the hardest emotional rollercoaster..especially if you have not one other family member or friend.
Thank you ever so much for all the info about your precious little boy. Loved his little wave at the end!!
Sebastian seems to know exactly what you are saying! Thank you for sharing all the information on his health! He is a cutie!
Stephanie, you nailed this Q&A! I was so intrigued from start to finish. And just when I didn’t think I could love him anymore, I’ve learned how truly unique he is. Sebastian beautiful, you are one in a million and you bring smiles to so many people lives! ❤
You are doing an amazing job handling all these questions with grace and clarity. Thank you so much! 🙏💕🙏💕🙏
You are such an awesome mom. Sebastian is very lucky to have you and Gio. It's also very enjoyable to listen to the way you explain your life with Sebastian. Thanks for keeping us so informed. I wish you all good things.
You have probably heard this many times. But you are such a warm, gentle and good mommy. Bless ur son. Beautiful family ❤
Awww Steph I’m so glad you and Geo have a date night that is so special you need that. I can see Sebastian is trying to communicate and that smile says a lot ❤
You are so articulate and knowledgeable..Love learning about Sebastian ♥️
You’re amazing! It must be so hard to deal with so many unknowns with a child with such a rare syndrome but you’re really figuring it out and being realistic about things and what he can actually do, here and now.
Hey Stephanie Sebastian and Gio! I've only been subscribed for a couple months but I absolutely love ur family!!! I've been watching all ur older videos too! U are such an amazing mother!!! Love u guys!!
Thank you for being here!!!
Sebastian is one popular little dude! Don’t underestimate the impact both you and Sebastian are having raising awareness of not only his syndrome but also bringing a sense of normalcy to raising a child with special needs. I love that you answer questions about Sebastian’s future honestly and candidly. It can’t be easy not knowing what Sebastian may or not be capable of in the future but you show that his value as a human is not measured by what milestones he achieves and I think that is something we can all learn from!
Really appreciate learning about Sebastian and all you manage to accomplish! You are a wonderful mother❤
💕 thank you for sharing Sebastian's story with us all 💕 I just love his Lil smile, it brightens my day 💕
You are the most remarkable person. For you to have to
keep things together for you, Geo and Sabastion is wonderful. I really enjoy being able to look into your life with all the challenges you face day to day. Keep up what you are doing it's so incredible.
When I was a stay at home mom, it was a very big blessing...but I did miss adult communication and interaction. You guys are so smart to prioritize your relationship with each other by making room for each other. Sebastian definitely seems to understand quite a bit, but you can see the wheels turning when he's processing. Having children with autism and working with special needs kids, it makes me so happy to see you offer different stimuli. My friend who had an older brother, that was born with something similar to CDLs back in the 70s, the experience with their family was so different. Her mother would lay him on a blanket and just leave him there for hours and hours. And honestly I think that's where my love is special needs children and people in general began. I always felt drawn to interact with him. I'm just so grateful for your Channel. Your videos genuinely bring me joy. You are a wonderful mother from what I can see!
Thank you for sharing, for your honesty, and openness. Blessings to you.
Stephanie, thanks so much for another great video. I am not sure if your realize that you are not only educating people about Sebastian’s syndrome but more importantly, you are sharing the overwhelming love that abounds in your family. Every time I see your family together and their outpouring of love for Sebastian, it makes my heart happy! ❤
Amazing mom! Thank you for the information, it can't always be easy. Sebastián is an Angel. It's not often that we are blessed to actually see an Angel! Thank you for sharing him with us.
It's not crazy to feel resentment for your husband to be able to go to work while you stay home, because I loved working and meeting different people and being able to just get out of the house; after breaking my back and neck, I'm at home all the time and it sucks after awhile. It's a great thing that you and your husband can talk and make your differences work because that is how my husband and I treat certain situations and it works well with us. Prayers for you all always and definitely for my little handsome Sabastian!!!! Prayers are always with you all. 🙏
Trust me, people who have NORMAL children feel that way.
@@sarah2.017 Absolutely. I believe that for sure
This was so wonderful of you to share all this information. Sometimes it’s hard to put in words to inquire information without it sounding disrespectful.
You're amazing. This is the 1st I've ever seen on your channel. Sebastion is one lucky little guy when it comes to his parents. I look forward to following your jouney. The whole world needs love more than ever and you are a chapion every day for a very special little boy.
Hi Stephanie. Like many others I had never heard of CDLS before your you tube channel appeared before me but I am so glad it did as I can see all the love you,Gio and the rest of the family give Sebastion and love goes a long way in any healing process.Thank you and take care xx
Thank you so much for taking the time to answer all those questions, Stephanie! This was very informative. I loved seeing those videos of Sebastian from when he was younger! So cute! He is blessed to have you as his Mom, and Gio as his Dad, and be in such a loving family. Sending you all my love and hugs, I love you guys! God bless you in Jesus’s Name 🤗❤️🙏🏻🥰
Hello, this is my first time seeing your channel. I appreciate you taking the time to share your experience with your sons rare disease. I truly believe that candid communication , as long as it’s delivered in a kind, respectful manner, is the best as well. I believe when we open up our minds to learn about one another, and our individual traits, we may see differences but also see the similarities. Subscribed 😊
This girl is insanely transparent. I’ve been following Sebastian since he was born. Best kid ever
Wow. You are such a good mom! Huge respect and I admire your GREAT attitude. Blessings to you and the family!
Great video Stephanie I do love watching, your such a beautiful family sending hugs and love ❤🐆
Sebastián is the sweetest fella.
Thank you for sharing.
I know this is a year old but I wanted to say that you are a wonderful spokesperson for CDLS. It doesn’t hurt that you are beautiful! You are a role model for all parents with disabled children. Your life is forever changed and you just continue to rise to the challenge. It is so obvious that both you and Gio love Sebastian. And we can see that he feels it. I think that’s something we know his brain is processing just fine. Love is just everything in the final analysis.
You are amazing...thank you for all your information. Keep going you are really fantastic and intelligent and compassionate
Absolutely a blessing. That smile says it all. Good job moma and dad. God bless yall.
Love how Nala stops once you film her 😂💗 Every time!💗
Lol!!
Great video. Thank you so much for all of the information. Sebastian is just the sweetest little boy. What a lovely little family. Much love to you all ❤️👨👩👧🦜🐕❤️
Love your Q&A videos, Stephanie. I also love how frank, honest and loving you are with your relationship with Gio and Sebastian. You have a great support system, too. Not very many families have that luxury. Lots of love from me, a mom with a daughter w/Down syndrome & autism.
Just saw this channel last night. Sebastian is such a cutie pie,such a sweet boy. You and you’re husband seem like wonderful parents so loving. You are both blessed to have such a special child as is he to have wonderful parents who love him so.♥️✌️
You are so sweet to answer peoples questions like this. You do such a great job explaining things. You are educating others on his syndrome and that’s amazing. I too try and do the same with my son who has Down syndrome. In fact, 3/21 is World Down Syndrome Day! It’s a big deal in our house. In fact, I got a tattoo that’s “the lucky few” tattoo, three arrows >>> for 3 copies on the 21st chromosome and because arrows are pulled back before they soar. Which is the story of our life. Thanks again for sharing all you do!!
Oh my goodness...Sebastian at 1& 1/2, and 2&1/2 so adorable!! His looks have changed so much from a baby face to a big boy face!🤗 I learned more about CDLS in your video today so many thanks to you Stephanie!! Blessings!!❣🙏
I love it when he smiles! He has the cutest little dimples.
Very interesting video. I like the question/answer format. Thank you for answering the many questions we all had for you. God bless Sebastian, Mom and Dad, Zeus and Nala!
You did great. You are so knowledgeable and a wonderful Mom. Love your videos and Sebastian.