Living with Spinal Muscular Atrophy (Type 1)
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- čas přidán 13. 12. 2023
- Isaac is diagnosed with spinal muscular atrophy (type 1). This leaves him with almost no muscular movement, causing him to be a wheelchair and ventilator user. Isaac wants others to know that his life is normal to him, and he likes who he is.
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the sister, understanding everything he says, its adorable. I can tell she loves him so much!
i wouldnt say her being able to understand what he says is adorable, wrong wording there. more like hard dedication to trying to learn how her brother speaks. fair play to her cos she didnt need to
@@jonnyhawkins7744 well I still thinks it adorable and amazing ❤️
I can't believe that she's only 11 years old
God bless you abundantly little missi
I work with ID adults. Some of them aren't very good speakers but overtime my ears adjust to their speech. The sister had adjust her ears to understand him.
I notice a common theme with these families. The siblings always are so kind and mature. I love seeing the relationships and bonds they share.
Es cierto. Eso es tan conmovedor de ver
Yes indeed ❤
I am multi disabled. My brother was always protective and patient with me growing up. He still does.
@@UnchainedAmericaWhat a great blessing 🫂🙏🏻
@@UnchainedAmerica My family was never that way with me when being blind, well *sometimes,* only my friends were... well *some of them* but some understood that I had impairments, and other stuff wrong with me so they completely understood what I was going through, and tried to help me through it. ❤
The father going to school with him everyday to help and be his nurse… astounding. I don’t know of any other fathers being that dedicated. This man is in a class of his own. 💜 A father beyond fathers.
Very impressed by his family's ability to understand him. The love they have for eachother is strong af.
My neice had SMA and lived well past her life expectancy. She was diagnosed at 2 and was only expected to live to 12, and she went to heaven when she was 29. The love between this brother and sister is so sweet! Love is what keeps people going. Bless these kids.
😢God rest her soul.
🫂 Some real world warriors. 🌎 ❤
Now there are a lot of therapies for SMA so the life expectancy got a lot longer, spinraza, zolgensma, evrysdi
I'm so sorry for your loss rip
I'm sorry for your loss
The sister though!!! Words can’t express how impressive she is. I hope the world sees her light from afar.
I love how Isaac is surrounded by a great community and friends.
Он Айзек . А это тупой перевод
You can just feel how much his sister Natalie loves and supports him, it's heartwarming to see. Their parents have raised two amazing human beings. Much love to Isaac and his family
Absolutely ❤
Isaac is a wonderful young man! His bond with his sister is so amazing. I guarantee she will always be there for him, no matter what 🫶🤗
Aww.....God Bless, Issac. My son had Type 1. You're doing amazing. And you have an amazing sister and family.
Made me really happy for Isaac when his dad shared that he always has friends at recess who will run up to him and play games with him. Games that he can do and are there to help him and include him. This family is incredibly sweet and supportive. When they teared up, I got teared up right with them. The bond that they all have is amazing. Great interview Chris.
God bless this family and these children. I am 30 and I broke my spine a few years ago I've been disabled since and I cannot imagine how much worse it must feel for this kid
My heart goes out to him my injury is nothing compared to the weakness he feels every day thank God he has such an amazing family it makes his life whole I can tell. God bless this family ❤
I'm a mom of a (born) disabled kid nearly your age. If you get disabled later in life you'll know what you lost and you'll know what you miss.
If you're born that way you can only miss having an ability in a very abstract sense. Like if people rub it in what you can't participate in.
My kid is pretty content most of the time actually.
Watch the kid with SMA say that if he could change a thing he would want to watch more cartoons - it's not being "regular" in our sense that crosses his mind.
Wishing you all the best!
Amazing family! The dad training as an aide to support his son and also bring in a bit of money is astounding…I’ve been in a huge variety of classrooms as a teacher and never seen that. The daughter and mom are incredible intuitive communicators too. They’re all so supportive of each other. ❤
Isaac and his sister are so supportive of each other, I wish the best of luck to Isaac’s family
Perfect ending. His sister is so young, but is wise beyond her years. Great advice. Sending love and prayers to this family.❤
Isaac is so lucky to have his dad with him at school. When you asked what some of his biggest obstacles were, the look in his dad's eyes, that love, is the love we all deserve in this lifetime. Thank you for continuing to share these stories, Chris. It truly has been life changing to watch your work!
Natalie, Isaac, Mom and Dad - you're all so interesting and wise. Sending best wishes.
The Mom had a very important part to say during the end. You can be vulnerable around your children. They know despite our best try to hide our struggles. Being age appropriate to answer their questions with honesty does them a great service. SMA is not who this young man is. Thank you Issac for sharing your family and life with us. ❤
His sister is such a blessing as well 🥺
Wonderful family,so gentle,caring and compassionate
Isaaks sister is so mature and both kids are so bright
“Still be funny, and still pick on them, and still let them do the same to you.” Yes! How beautiful, and how true. 💛
I love Issac saying hes happy with who he is ❤ part of that is his wonderful family.
Edit: goddamn Issac is an awesome human. Its true that comparison is the thief of joy.
If you're reading this Issac, you freakin rock. Your family rocks. I wish nothing but happiness for yall.
I'm amazed at how his sis understands him so very well.
I worked in the medical field, & I simply could not understand any words he said. That, alone, made me feel inadequate and not-too-smart.
I was a live in caregiver for a woman with SMA for about 3 years in college. It was life changing and I have so much respect and admiration for this family. They sound like such awesome people. Love his sister and their relationship seems like the strongest connection in the world. Isaac seems like a really cool person. ❤
This whole family is doing such a good joh, and I love Isaacs sense of humor. They deserve all the love that surrounds them and even more!
So many challenges, yet so much love! It's good to know Isaac is content with his ability, and the hearts of his family are enormous! We all want the best and more for our kids, but self love and acceptance is the greatest gift of all. Love to you all! ❤❤❤❤
You can say disability! It’s not a bad word!
Siblings have a special bond ❤
I like who you are too, Isaac. In fact, your whole family seem to be stellar folks. You’re really fortunate to be surrounded by such exemplary people-I bet your home life is a bastion of goodness. Not everyone is so lucky, so cherish every day. I know they feel the same way about the joy you bring to their lives too ☺️
Thanks for sharing your story Isaac and family! Just wanted to add : I m so impressed with Natalie. She is very wise, I can't believe she is only 11 yo! Love from France!
I love the loving bond between Isaac and Natalie but that her main advice is to tease each other. I think siblings often take teasing for granted and usually just complain about it, but letting your sibling tease you sometimes can be an act of love.
👏👏👏 The only word I can use to describe this Family is Incredible. The love they share isn't broken and still whole ❤ The Father dropping everything an applying himself in school to help his boy is INCREDIBLE, (I was balling!) The mother still being there for both of her kids and especially her husband is Incredible! She wanted to do more❤. The Beautiful sister who is a shining Angle for her young brother who understands him like no other! INCREDIBLE ❤ You guys are doing such a good job I'm so proud of your daughter and amazed of how much love your family has pumped out.
Best channel ever!
What a truly cool family! And it must be a big comfort to Mom and Dad that if they were unable to care for their son for any reason that their daughter would be there for him.
What a loving family. My heart aches for his parents pain.
Such a sweet bond they have. My daughter was diagnosed at 4 months old and she passed at 7 months old. She was not expected to survive past 2 years old. It was the hardest thing for us to ever go through. I am so glad medicine has come as far as it has these past 38 years since her passing.
Even though it’s been many years, I have no doubt that you still often think of your daughter. If you’re willing to share her name, I would love to know it. (My daughter, Abigail, was stillborn at 33 weeks many years ago).
@@pinlight97 She was born Sept. 1985 and passed away April, 1986. Her name is Deidre. Not a day passes that I don't think of her. She was such a happy and good baby. We noticed the floppiness when she was 2 months old and was diagnosed at 4 months old.
@@pamelawooten3251I'm so sorry for your loss. Your Deidre sounded like the best baby, may she rest in peace 💜
This is one of your best interviews, Chris. I was hanging on the answer to every great question you asked.
Awww 😢❤❤ his dad is just so sweet
He really is. It made me so sad when he was tearing up. Poor guy, he just loves his little boy so much 😢
I am humbled by Issac and his family.
My heart just feels so full. That little girl is such a good soul. And the parents. This video is great!
You feel the love of these people. Such a loving family
Oh how fun you two siblings are! I can feel it :) love from Italy
i love his sister that last quote is spot on i have a brother with a disability and we still pick on each other lol
that had to be the most well spoken and mature young lady I've ever seen.. bless her heart and the brother well the whole family..❤ may God bless them all each and every day...
This family is just straight up so cool. They seem chill and just relaxed about life. I love it. They do so much for each other through their actions.
What an amazing family! The siblings were just meant to be siblings, the mom is awesome and I want to give the dad a huge hug because he cares so much it hurts! ❤
What a wonderful family and heartwarming to see the two siblings interact ❤
this is so so sweet. the love between the siblings is so strong and pure🥰
Wow... Natalie is an absolute gem of a human!!! God bless this family! They have more love here than many other families!!!
Beautiful family, and what a sweet sister ❤️❤️❤️
I think we all need to slow down. I never imagined feeling this way but with age I can see what is really important and I think we all need to stop being consumed with chasing money and material things. Isaac can teach us all some lessons
amen. my issues are moderate (fibromyalgia and some mental health issues, so maybe some would call those mild, but it does affect everything I do), so I have had to include the children, even from a young age, into my health journey. We homeschool, so they have had to go with me at time to doctor appointments. Or they have seen me sit on the couch all day instead of be active (i.e. we do school from the couch instead of out and about). my husband, too, has hard to learn how sorts of things that other husbands don't have to learn. And of course I have had to learn my limits and the consequences of ignoring them. I appreciate these videos so very much because I live on the edge of these situations myself. obviously, it's nowhere in comparison to these severe. but I really appreciate this dad's vulnerability. And his ability to flip the norms and be the CNA and how mom goes to work full time. Way to go, Dad! You're family is working out beautifully! It's hard work, but all families are hard work, just like you said. All families have different stressors. And those kids are not resenting the lives they have because their parents love them and each other and the kids love each other. It's very, very obvious. Especially when the mom breaks down because she sees the dad struggling. Bless her heart. What a beautiful video!
Thank you for sharing, Chris. This is very much a loving family, and from what I see, so strong. God bless them richly and provide the strength they need both physically and mentally.
Wow I cried watching this!! Your family has so much strength and kindness! Beautiful family 🥰
Your channel is one of the best channels on youtube ever.
What a beautiful family! It’s amazing to see so much love between a brother and sister.
What an amazing family! Issac seems so confident . He has much to teach the world. He's got a great sister.
Thank you to his parents for opening your hearts to talk about the hard stuff.
Isaac, you're the coolest guy I've seen all day! You rock, buddy! Never give up!
This channel is amazing and inspiring. I am grateful for this channel. Thank you for sharing your story Isaac and family.
i absolutely adore isaac and his family. thank you so much for sharing your story with us. you are so awesome 🩷
I always cry when watching this channel because I feel overwhelmed by the kindness, love, warmth and empathy of both the interviewer and the loving families he interviews.
What an amazing family. Natalie, you are truly the best sister ever. The love this family has for one another is setting a standard for everyone. Isaac, you are incredible 💕
Thank you for making stories like this public.
This was a great interview! Isaac's bond with Natalie is really amazing! Wooow dad is such a great guy! He stepped up and became a certified nurse's aid! Mom's doing a great job as well!
Your family is amazing! Thank you for sharing your story of courage, strength, and love, real love. Blessings to all of you!!
I really admire the four members if this family. They, are fighting together! Congratulations for being this way and never give up!!!.
A beautiful, dedicated and raw family ❤ I appreciate the parents sharing the tough side of things but a confidence shines through that they will get through as they can trust and lean on each other. I love how Issac prefers to use his own voice and I love how His family have developed an accute understanding of his subtle words. Just an amazingly tighly bonded family. Love will continue to carry you all through! ❤
The sister.... What a beautiful soul... Instant onions 😭
Such an awesome and brave boy! Obviously he is very smart too! All the best to Isaac and the entire family 💖
Most of these videos make me wonder why I ever try and complain about my epilepsy when I am still able to live alone and do a lot of things myself even if I am somewhat restricted still
Epilepsy is still bad. Just because he has something worse than you it doesn't mean you can't complain about your condition
Allow yourself to feel compassion for your own situation. ❤
What a loving, beautiful, amazing, inspirational family. I love each one of you. Thank you for sharing your story.❤
You guys are beautiful!!!! Big sis... Oh man, the world would be perfect if everyone had one like you
What a fantastic family....supporting each other in such a loving way...despite the crazy challenges they must face! I salute you guys!
Isaac is awesome man, good game choices too. Also, play hollow knight man it’s awesome, and make your sister play it
I love the family dynamics! And it’s so wonderful that Natalie understands him so well. I tried very hard but couldn’t (other than yes and no). But that would NOT ever prevent me from smiling and saying hello and interacting if I saw this beautiful family out and about. They are amazing. Love to Isaac, Natalie, Mom and Dad!
I'm literally crying for how amazing this kid and the whole family is and also the society we live in it's sometime underrated given that we manage to give a chance for a decent life even to people with extreme disabilities like him
I ve discovered in the past few years, that some families that look so great from the outside just arent at all. To have this much love and honesty, is truly a blessing, something to be be proud about and to cherish like crazy. Thanks for sharing.
What a completely beautiful family,inside and out. You can just tell how much they love and support each other. Its beautiful ❤️
He has an amazing family thst love him alot and it's so great how his sister understands him
Hi Isaac and family!
You are such a joy! :)
What an amazing loving relationship between brother and sister, so heartwarming to see.
This young man has a very strong character and his sister is so mature and supportive of him.
God bless all of you!! 🙏
Chris, I love the way you ended this video. Isaac's sister is the most precious girl, so understanding and compassionate. As much as we may be so sad about his condition, his own attitude is remarkable and he has a tremendously supportive family.
This beautiful family makes me have faith in the world. What a beautifully spoken, caring 11 year old sister and what a sweet, kind and intelligent young man. Amazing parents as well. Bless them
that sister is a gem, if I was disabled and I had her, I would very likely also be able to like myself
It's been a while since I've watched this channel, and I'm so glad to see the comments got reinstated!
Beautiful family
Very important Project
May God Bless this family and these wonderful children
Beautiful people! I admire your tenacity and ability to preserve through your difficulties! ❤
Love the dedicated family, its always very uplifting to see people be so good to their kid in need. I'm sorry for Isaac that he's got SMA, hopefully one day in the future there will be a cure for these shitty illnesses. Game on, Isaac! 👍🎮
so much love within this family ❤️
Hola Isaac eres un niño muy inteligente, estoy segura que das grande ejemplo de vida y esfuerzo a otros que también pasan o están padeciendo este tipo de sindromes tan poco conocidos, qué bueno que aceptaste la entrevista junto a tu familia y asi explicar con detenimiento tus vivencias y la forma de llevar adelante el trabajo que hacen como un equipo unido y fuerte.Saludos y mucho ánimo para ustedes desde México.
I LOVE this. I see you guys in the hallway every day, and I always want to ask all of these questions. I don't want to be intrusive. Thank you for answering all these questions and I wish I had seen this years ago!
Beautiful family ❤❤
Another amazing family and another amazing interview by Chris. What great courage and love they have! There are no words for how much meaning they have given to each moment because they have changed their lives and themselves to make this difficult medical situation work. Isaac's sister is wonderful, saint-like. Powerful statement by Isaac: "I like who I am." I really wish I could interact with this family and Isaac once a week or so. I want to be a person of encouragement for them. Such great challenges makes them great people and I cannot help but realize how much time I waste and how much I take for granted. Yes, there is a list of very good service to the world on my part but it still seems they as a family have accomplished so much more, that I feel more determined to be do more for the world (or at least I feel I am being challenged to do much more!) . Much love to this family of love!
What an amazing family! A good example for us all.
Wow CNA! Thats great! Glad your compensated so you can help not only Isaacbut your entire family still financially. Glad you all have that! Wonderful sister wonderful parents!!!
Merry Christmas to you and your family, Issac
I adore this family! They're all so awesome. 💕💕
Wow this family is amazing and super supportive
Thank you dad (Jeremiah) for being so honest and open--we notice it and we thank you for it.
What a wonderful family 🥰 I wish them all the happiness 😊
I am glad that you gave Isaac a chance to speak and not only asked yes or questions.
Such a loving caring family.