Facing a Terminal Illness with Strength and Love (Charcot Marie Tooth)
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- Опубликовано: 11 июл 2018
- Jacqueline is diagnosed with Charcot Marie Tooth Type 1D and was told to prepare for a shortened life expectancy. This is her story.
Check out Jacqueline's non profit at www.justforj.com/.
SBSK Socials:
/ specialbooksbyspecialkids
/ chrisulmer
/ specialbooksbyspecialkids
"By the grace of God, Jacqueline is still living life to the fullest and impacting EVERY life she is a part of. The doctors from 2012 are amazed at how she is defying all odds.
We are SO excited to celebrate Jacqueline's SWEET 16 today!! Join us in wish her HAPPY BIRTHDAY!!!💕"
(July 1, 2020)
So she’s still alive?
@@jnieswartz4878 Yes, she is 😊
Happy birthday!!
Hallelujah!
Omg she’s going to be 18 this year! That’s so awesome! I’m so glad to hear this! I saw this video when it originally came out and I’m rewatching old SBSK vids late this night and it makes me glad to hear she is still here today and I hope she is doing well. Please send her my best wishes, all the way from Vancouver BC Canada 🍁! 💕
My Lord, these children with terminal illnesses are so full of wisdom and seem to understand the true value of everything. She's amazing.
This is so true. And so brave. I learn so much from them. And I’m 30.
Its hard to think about it this way, but this little girl has more wisdom, character, awareness, and bravery than most adults.
It's incredible ❤
@@nataliesreptileroom3348 she’s 14, not a little girl
@@Sabouma28
You knew what she meant. 🙄
When she says her brother is her best friend & starts crying... that got me. She is just so beautiful & can learn so much from her.
Me too ❤️❤️❤️❤️❤️
Yeah that had me
I’m a 47 year old father of twin boy & girl and I absolutely broke down crying at that part…especially that she looks like my daughter.
Same to me it made me cry 🥺😭!
same
WHY DOES CHRIS HAVE TO INTERVIEW SO MANY LEGENDS AND AMAZING PEOPLE? WE ARE BEING SPOILED WITH THIS GREATNESS
Not even one single bitterness in her face I saw, and not a single word out of place in her mouth. God, how blessed we are to witness a character like hers? Never in my life will I forget these eyes and the streghth with which this Lady speaks. God bless her wonderful soul.
Me and you both brother..!!!!! :(
🙏🏽
Glad to hear she is still alive and kicking butt! There was a man named Eric Lynch who had a severe case of Ehlers Danlos syndrome, the first of it's specific kind when he was born. He was not expected to make it out of his early teen years, and he made it to 39 years old. There is always hope, if not time.
Never thought I’d see an Eric the actor reference here
@@powergod897 Eric the beautiful angel.. ack ack
I still miss Eric! Him and Artie were hysterical.
Hi, Jaqueline. I have CMT Type 1A, so I am not as severely affected. But we stand strong with you. 🦈🦷👣I'm too emotional to say much more, but I'll be thinking of you. ✊💖
My heart breaks for the both of you💔. So you have the same as her, just not as severe?
@@figgynewton3138 CMT type 1a affects myelin (Schwann cells on peripheral nervous system -- the "insulation" on the axons).... there are multiple cmt type 1 diseases. @theartfuldodger mentioned CMT1A, which causes duplicate of PMP22 (proteolipid myelin protein 22)... and that's the most common type of cmt. And there are good rodent models of it... where there are a bunch of repeats of human pmp22 gene and then try to cure it with drugs.
The next most common type is CMT1X... then next most common might be cmt1b...
Then there are cmt type 2 disease, which affect the axons and axonal integrity. ... such as CMT2B ... 2B is really interesting bc the affected gene is mitofusin 2 for mitochondrial fusion... (but there's another, also)... In cmt1b it's kif1b.
Ya know, there's an MS drug that is useful by rescuing the mitochondria to prevent axonal breakdown....I wonder if it could be useful in type 2 disease where its an mfn2 issue bc that's mitochondrial, too. There's some other good drugs being tested though, too.
I have CMT type 4E, I am not as severely affected either. Stay Strong buddy! We stand strong with you!
Have you tried high dose thiamine therapy? It could put all your symptoms in remission.
Type cmt1a here and this girl making me cut onions and realize I need to stop making excuses and get back on track💪... She's truly inspiring
No child should have to endure such awful diseases and illnesses. This little girl is an incredible human being. I send her love and really wish things could be better for her
That's an understatement. If I could, I would take every child's ailment.
♥️
Adults shouldn't have to either not just children
It’s because god loves them!
This left me sobbing like a baby. Would love an update on this precious young lady!! ♥️🙏
Thank God that the comments are back! I've always wanted to say how strong and intelligent she is. Bless her!
YES! Thank God indeed!
I’ve been following SBSK for years now, and have watched every video. But this is the first one that has reduced this 61-year-old man to sobbing tears. She’s such a beautiful soul. ❤
This beautiful young woman has influenced me so much to be a more humble person in the sense that she is so smart and emotionally aware.. I'm so happy we can express that and I hope she revisits these!!
OMG !!!! I had to pause after that question to her asking about her brother: OMG !!! You are NOT human if you didn't watch that and didn't have tears flowing. Holy Cow. Talk about emotional. God Bless this precious girl.
May God always bless Jaqueline and her family❤️
There is a treasure in the soul of this girl.
I've watched many of these videos, but this one really impacted me. What a beautiful family. I have a feeling they have all impacted more people than they could ever guess
Chris's videos should be shown to middle school kid's, it might teach some not to bully and think they are better, things can happen at any time to a so called normal kid. Great family, tough journey, you are a sweetheart.
Yep- they should be a part of every child’s schooling… an actual class ❤️
Absolutely agreed.
“ I pray to God I’ll be Happy”. Wow!! My heart is full of love for this beautiful young lady! God will guide her through her journey….
I have tears in my eyes. Because of who she is, she does make you rethink life.
She is truly a bright light, strong and beautiful girl💜
These kids are so inspiring and they really make you appreciate everything
‘Be grateful for what you have, because something can change in a second’. What wise words- I will certainly keep her words in mind throughout my life.
She's beautiful and doesn't deserve her situation, I hope her life is filled with nothing but comfort and love
As someone with CMT (or that's what doctors think it is, we couldn't find a direct answer) is nice not to feel alone, mine isn't as severe but I stand with you! I have to wear braces and it can be hard but we overcome it all as a team! Praying for you
Jacqueline is a beautiful young lady. Prayers for her family. Praying God continues to give her the strength and courage to handle her disability. She has a lot to teach people. Thank you Jacqueline for sharing what you go through on a daily. Beautiful angel ❤
children are special Angels, God bless them all.
Of all the interviews you've done, this one absolutely shattered my heart because Jacqueline is so much stronger and more positive that I could ever be.......
Truly heartbreaking. Such a beautiful little girl, such a pure heart . All my love to you sweetie, you are an angel ♥️
How dare you say heartbreaking.
@@jennifercochran6398 Sorry you don’t like honest, heartfelt comments. Hope your day gets better.
You think she wants you to say her life is heart breaking? I rather have hers than yours.
@@jennifercochran6398 I don’t think that was the spirit of the original comment. Her life is not heartbreaking. It’s actually quite beautiful and blessed. Her condition and struggles are heartbreaking, and yet it’s so beautiful to see her overcome those struggles. We all have things we struggle with, and to rise above that is something pretty awesome.
@@jennifercochran6398 oh wow ! The comment's police is out !!! Are we still free to say respectfully what we feel or think or should we only DARE to say what Mrs Cochan deems appropriate ? 😂
"Let's not start an argument." I love this whole family 💓
What a truly beautiful, remarkable human being she is. Her family is so lovely.
I can feel what J's mum feels, my kid lived in the NICU for 2 months, had about 10 blood transfusions, I don't remember the number of ABs doctors had to give him. It was - love your kid, coz he is better when you are by his side, but don't get too attached to him, coz noone knows what tomorrow brings.
My kid is a fighter, he is with me thanks to his doctors. ❤
What a powerful and loving family. Jaqueline is truly an angel on earth and she does shine brightly.
The most incredible thing about the beautiful people I've seen in all these videos is that not matter how hard is the situation they're in, every time they face the question: "If you had one wish, what would it be?" They never ask for a "cure" or for living longer or even for a better situation.
This is so amazing! They are always so thankful for what they have! This is great! And then Iook at myself and I see so many reasons to be thankful for, but most of the the time I act with indifference. This is just one of the reasons why I love so much these kids.
I feel exactly the same way! I know there's some rich people watching these videos, someone get this girl a horse 🐎 please!!
Loved when McKenzie said let’s not start an argument, so adorable. Jacqueline and her whole family are beautiful and so loving. I wish them all very well and send them much love.
I wonder if Jacqueline knows how many people she has inspired and impacted just by this video alone. She’s so wise, far beyond her years. What an angel among us.
Amazing family ❤
A truly inspiring teenager! A beautiful spiritual soul. My 💜✨ goes out to wherever she is. I hope her siblings understand how much they mean to her, and each of you are courageous too. Mom, you remain centered through each day; you are thought of…
Agree 100%..
Be grateful for what you have because something can change in a second. Those are words we should all take the heart and words we should live by to honor people like her.
This girl reminded me of my little sister Shilo (god rest her soul) . This is definitely one young lady who's certainly making a difference for the better In the world around her. Jacqueline your one amazing girl.
You are special and beautiful. Your entire family is beautiful. Thank you for letting us in and letting us get to know you.
You are an absolutely beautiful young lady. Very intelligent. Very interesting. And your eyes are gorgeous. You’ll never need mascara. I pray your future is miraculous!
I hope she's still okay... Also this girl is really smart, I don't say this about everyone, she's really mature
she turned 16 last year. there's a facebook 'just for j'
Some of the best advice you will ever get, will be from a child knowing they won't live long... listen to what these kids say. Im so humbled and appreciative of the time i have on this earth.
This interview seriously pulled so tight on my heart strings.. with all the tears that I have she is an amazing young lady. Hugs beautiful ❤️❤️❤️❤️ you are amazing in every way.
What an amazing beautiful girl and family. She is definitely a LIGHT in this world!
Jacqueline is a beautiful girl , with a beautiful family , I feel my life has been enriched by watching this video , I 've watched it a number of times now ❤
She is Amazing !
So is her mother and family
The thing Jacqueline said about her brother (that he is one of her best friends) really teared me up, because that´s exactly how I feel about my brother too. 😥😌
He have always been there for me when I am having a bad day, or if I am sad about something... 😏
I really hope that she is still okay today, and is getting all the help and support that she needs... 🤔
❤️ as a brother to a sister myself,i send love
I feel the same about my brother too. Best friend...even though we drive each other nuts on a regular basis
I felt that too. And ironically my name is Jacqueline too.
@@IkesPimpHand same
Same. I love my brother.
I love this little lady! I've been wondering about her and praying for her. This family has really stolen my heart. Hugs to all of them!💜💜💜
She reminds me so much of Dakota Fanning. She is so well-spoken, beautiful, and STRONG!
Yes ❤
Bless her sweet heart, what a beautiful young lady, love, hugs and prayers to you sweetie🙏🏼♥️❣️❣️❣️❣️❣️❣️❣️❣️❣️❣️❣️❣️
Jacqueline maybe young, but you can tell she has knowledge of an old soul. shes very wise for her age. I hope she's doing well , and her family. this interview made me cry , smile and cherish all at the same time. Thank you Jacqueline
Whoa! What an intelligent, well-spoken little girl. I pray for her.
Would be really great to have a visit from one of those therapy ponies pay her a special visit! Would love to see that happen
Jacqueline, you are one of the most beautiful, strong and precious people that I've ever seen. I've never met you, but I am so proud of you. Love you my friend.
So thankful for these humans who share such personal stories for us to be educated, inspired, and more understanding of what life means. Thank you Jacqueline
In life, not all of us are granted everything that our hearts desire. This girl may not have been granted a body that works like everybody else’s, but she was given more love than many people will ever understand. And for that, she is truly blessed with a beautiful family, and I wish you all the best in the world.❤❤❤
Out of the mouths of babies. So giving...given what she deals with ...happy beautiful girl! Just for J!❤❤
What a beautiful and impressive young lady. Thank you for allowing us to meet her. Such a strong wise person with absolutely gorgeous eyes.
She is awesome. I just love how strong she is. She looks like she has an old soul in her. Her brother looks so kind, so loving. Amazing family. Wish I could meet them
here's the beginning of 2024 and I hope the absolute best for her ❤
"To let them know that there are other people to lean on, it's not just you." I love that so much. I have so much respect for this family. I am in a similar situation with my older sibling. I hope the best for everyone💙
3 Min in and im crying my self out , all those people that complain about little things etc .... and you have this young girl brave whit he illness and seeing he cry beside he brother that touch me la crazy ! I wish you heahltyness , love and all my sympathy 💚🇨🇦💚
She had a 16th BDay celebration in June 2020. 💞 I hope she lives a happy life henceforth❤️
Man... Life really isn't fair... :(
Bless her little heart... I wish I could be half as strong as her.
Finally comments are back and I can say you are a true angel in my eyes! Sending you all my positive thoughts and vibes from far away Ukraine 🇺🇦 you are so strong, an inspiration for many people all over the world. Smile! Your smile is great 🙂
I'm praying for you and your country hoping you and your family are safe, sending love and support from Florida ❤️
@@angiepangie989 thank you 🙏🏻 front line is less than 100 km from where I live, people are on edge, every family has someone who is in army now. I pray that it will be over soon
Watching SBBSK program, I am truly amazed at the strength, faith, and love these children/young adults have. They are compassionate and gained such insight about Life!
’’you learn a lot from just sitting back and watching everything. '' AMAZING AWARENESS
2:47 OMG This is LOVE .. right there!
When i saw her for the first time i understand there are such a wonderful people who have different way of thoughts, different way to leeve, and it is truly better . Stay happy dear
I’d give this girl all the ponies in the world if I could
Hi Jaqueline . Happy 16th birthday . Thank you for doing this interview . It is so nice to meet you .
Aww bless her heart I couldn't watch it all without crying.
Jacqueline is such a beautiful young women, I'm so inspired by this video! Thank you Jacqueline & family for sharing your story 💛
Keep going strong beautiful girl 🙏🏼💓
I too have CMT and it’s slowly affecting the muscles and nerves in my legs and hands as well.
Your strength is amazing though and I’ll remember that each time I’m having a hard time myself ✨
Hey, which type do you have...if that's OK to ask?
my mother have CMT2CC,her right hand muscle not well and breath is not good😢
are you have CMT how many year and now you breath and talk is good?
Broke my heart in the first minute.. she deserves more than most what we take advantage of
I REALLY hope she's doing better now!!😍Such a sweet girl!💓
Cuánto para aprender de ella!!! Cuánto amor a su hermano en esas lágrimas!!!. Cómo está Jacqueline?? 💓💓💓💓Saludos desde España
"In reality, none of us are promised tomorrow!" A wise, pragmatic & strong mother, trying to make sure they all live in, & for the moment. 🙏
She is loved and lovely.
I hope she's doing well. An happy
What a great brother. I love you guys.
What a beautiful inspiration to the world. What an amazing beautiful family. Wish I could hug you princess 🤗. Xxxxxx
“Be grateful for what you have, because something could change in a second” Words I will always take for granted, unlike this baby. She’s incredible. I love her intelligent answers. She’s so educated, such proper grammar ♥️ She’s content as much as she can be in her situation. And I love that she truly seems grateful just to be here and have family that loves her, the moments and time she gets to spend with them ♥️ Sweet baby girl ♥️ I’m so sorry that she doesn’t have more time. And I know that’s a sad thing for me to say because she’s so accepting of her situation ♥️
Girl, YOU INSPIRE ALL OF US! 👏🏻👏🏻👏🏻 You are stronger than the average, stronger than the 99.5% people I've met, I wish you THE BEST and I pray for it 🙏🏻
What a beautiful intelligent articulate young lady 💕💜 she's a delight to listen to I'm so glad she has her brother and sister ❤️ 🌈 she is wise beyond her years
Oh gosh! This tugs at the heart strings. What a beautiful, wise soul and an equally precious family:) much love to them xxx
I hope Jaqulin is still doing well!
I love this channel and everything about it.
Such a beautiful spirit and strong family. This story really pulled at the heart strings. Learned a lot from such young person in such a quick interview. 🧡
Nice to meet you young lady. You have made my day! Thank you for sharing your story. Keep shining your light!
Jacqueline, I am honored to get to know you.❤️🙏 You are indeed a light to the world.
Oh I love this precious girl🥰 ❤️ Jaqualine thank you for your courage your sweet soul and being a light! You definitely made an impact on me and my heart thanks you. Thank you too Mama, for what you said about living for today, thanking God each day for being here, waking up, breathing and to go out and make a difference! Inspiring. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ love and prayers for you all
She mentioned that she loved Horses... It would be wonderful if there was a stable close to her, where she could be brought to see the Horses...
Totally agree! I have tears in my eyes...she is so strong. So beautiful ❤️
I feel ashamed because of complaining sometimes when she would give one day to walk to play God bless her
Very special person. She's a very smart and brave
OMG, when she said "he's one of my best friends" about her brother, I started crying.
She is very special person
God bless her and may god be with poor sweet Jacqueline.
She knows her purpose and fulfills it to the max ☺️ we all need to slow down
She is so beautiful and intelligent. Praying that she will have a long life and beat all odds
You are special Jay don't let anything or anyone tell you different your child of God and your special because you're saving people's lives and they're saving people's souls God bless!