Growing Up With Spinal Muscular Atrophy
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- Опубліковано 25 лип 2016
- Noël Ratapu was born with a condition that means she is gradually losing muscle strength and mobility. Now 15, Noël has found her voice and identity in the lens of the camera as she accepts life with a disability and documents her journey through photography.
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The girls at school were probably just jealous because you’re pretty.
Cute Pumpkin and not a nasty human being. Or like when all people have to rely on is looks or possesions... which can all be lost. A good heart isnt that way
She is pretty
. . . . and talented.
Yep. She’s beautiful, and they can’t stand it. Pretty vile
I don’t get people thinking that someone with a disability is something to bully them...horrible!
True ey.
She should find someone who will publish her photographs and add her thoughts and feelings to the book. She can narrate why the photo was taken, how she felt about the circumstances that led her to take the photo, and how the photo makes her feel about herself. She is truly and inspiration. Loved the video!
I can't believe anyone would bully this amazing, beautiful girl! She is someone I would have loved to be friends with in high school! Being in a wheelchair of course is a part of her, but in NO was defines her! Her creativity, intelligence and personality are what shine. I love her photos. So glad to see her growing more confident, she is amazing and deserves to embrace life fully and enjoy it!
Y
She is amazing!!! ❤️But bullies aren’t amazing. Bullies are garbage
Have never understood bullies, broken people who never learned empathy for one reason or another. People have tried to bully me a few times in my life, never worked out very well for them though.
@@hikareti9503 Bully the bullies.
Hurt people hurt people gotta send love in all directions. Darkness doesn’t get rid of darkness.spread the light ❤️
This girl is so, so beautiful. Wow she's gorgeous.
Whoa! No kidding.
Young people can be so incredibly cruel. You'd think that by school age, parents would have taught their kids compassion. Unfortunately, compassion is a quality that some people just never learn.
I have a 4 year old daughter just diagnosed as type 3 two months ago. This is truly beautiful. I hope my daughter is like this beautiful young lady.
I'm glad you had the surgery young. I am almost 70 and have severe scoliosis. I didn't have an operation and my spine is an S curve. Have to have x-rays to make sure my heart has room. So proud of you for how you've dealt with this. I, also, love photography. Wishing you all the best. God Bless. 🌷
Who can bully such a precious young lady ugh
I was born with cerebral palsy, I was bullied by people in high school, and just in general. God, surrounded me, with wonderful, positive people. Sometimes, I find myself depressed a little bit. She, is such a beautiful person inside, and out. I wish her the best in life. Keep smiling, and stay positive, cause you're a great young lady.
Kids, and even adults can be so cruel sometimes. I don't see a handicapped person. I see a beautiful young woman.
People are so dumb. She is beautiful, talented and strong. Who wouldn’t want to be friends with her?!? She needs to realize that she’ll get so much further in life than all the bullies she has encountered. When I was her age I’d have been mesmerized by her and would have wanted to be in her presence all the time.
I wonder if Noël watches @Squirmy and Grubbs. Shane had SMA Type 2. They’re such a lovely couple. I know she’s about 17 now and this is old, but I think it’d be awesome for them to connect. She’s so talented and kind, I hope she can push past some of the anxiety and accomplish everything she wants. ✨✨✨
I watch them. They are hilarious and such an inspiration. Anyone with a disability could benefit from watching them.
Yes! I think she would be a great friend for he and Hannah
Skyler Gray I love squirmy and grubs!
I love Hannah and Shane
@Bob 1 It's not patronizing at all. She could simply learn a lot about life and how to cope by watching Squirmy and Grubs. They are great role models as Human Beings, disabled or otherwise. If you'd take the time to watch them you'd understand. I believe she would benefit greatly just by watching them. I know I have.
What a GORGEOUS young lady! She is learning how to make the best of a less than perfect situation. Developing her God given talent will continue to increase her confidence. Life is truly what you make of it. Great going Noelle!
Lord she is beautiful and so strong...I hope she gets all the happiness
Noel you are a very unique person.. There is no one in this world that is you. You are an inspiration to all. My wife and I have a 20 year old daughter who exhibits all the same stuff that you do and yes she is a little worse than you. She left school in Grade 2 basically for the same reasons. She knew she was different. Good luck to you and your family and embrace life.
Honey maybe some of the staring is because you are so beautiful
Right?!??! SHE'S GORGEOUS!!
Absolutely!! I thought so as well, shes gorgeous!!
Exactly.
Absolutely beautiful inside and out!!!
She is beautiful ❤️
It's unfortunate she has low self-esteem because of her situation. She's gorgeous and cool, I definitely gotta crush
Noel, your photography is amazing! Seriously, that's a gift! Love the perspective, emotion, lighting. It's like you capture what you're seeing and feeling, through your eyes, and you recreate your moments for us to see. Thank you for this honor!
She is a fantastic photographer. I took photography in all four years of high school and two years in university and she is way better then I ever was.
Keep your head up high I'm in a wheelchair do to cerebral palsy from lack of oxygen at birth. But I feel for you because I know what it feels like not being able to do something you have wanted to do your whole life. Keep your head up and keep up the good work and do whatever you want don't let anybody tell you that you can't do whatever you want because you can.
Such a beautiful girl. Caring, loving, and talented. You've the smile of an angel. Those who bully do so because they are jealous. You have a bright future ahead of you and know that people from all over love and care about you. God Bless.
*Love from Colorado*
She is so beautiful model worthy
What a beautiful smile. You’ll find that as time goes by you’ll care less and less about what others say or think. I went though the same thing when I broke my neck 22 years ago
This channel always has the most amazing cinematography.
Mybe they look at u because u are so beautiful
Once again, an incredible job done by Attitude! It is so beautiful to see how Noel has blossomed both mentally and emotionally. I get the feeling that NZ's educational system has to do more on the prevention of bullying. The tween and teen years are a tough time to deal with, and even more so when you have a challenge that sets you apart from the average. I want to say that while I didn't really care for the more morose looks that she had with her makeup in her photos, it's clearly a part of the process of figuring out who she is. I think her parents pushing her to do more with the beautiful way she has of expressing herself with the camera is absolutely wonderful. And yes, Noel has a wonderful eye for photography. It may be quite some time before this comes up, but she and her parents should start looking towards ways for her to continue her love for photography when it gets too difficult for her to lift, hold, or adjust the camera. I just can't get over the difference in Noel's look at the beginning and the end of this video. And I'm not talking about how much taller she's sitting. She clearly has quite a positive change in her confidence and self esteem. Noel, YOU GO GIRL!!!!!!!
Thanks for the feedback Nathan, we hope you enjoyed this documentary and stay tuned!
Beautiful girl, beautiful family, thank you for allowing us to witness your strength.
I also grew up in a small town. I have sma type 2 so mine is quite a bit further progressed. I was always the only girl in a wheelchair at my schools. I'd like to talk to this girl. Things do get easier as you get older with this disability. Emotionally I mean.
Thanks for watching Jessica!Hope you enjoyed our channel!
Right on girl live get better with disability when you get old no doubt about it
I also have sma type 2, I always wanted to know ppl with the same thing just to relate
SMA2 here. 33m/Aus. It absolutely gets better as you all grow up.
I had spinal fusion at 14 due to idiopathic scoliosis. I was a gymnast up to that point. I went on to marry and have 4 children. I am now age 53 and the many years of inflexibility are catching up with me. It was bound to happen. I wish Noel all good things.
THX 1138 her disease is life threatening so don’t minimize by comparison
@@joanbaczek2575 Not minimizing or comparing. Everyone has their own defective parts. My prayers to her and her family.
@@joanbaczek2575 It appears someone has hijacked my UA-cam account. That comment about squirmy and grubs is not me.
We live in a sad world where people judge based on difference. I suffer from Duchenne Muscular dystrophy which means I have a limited lifespan. Thankfully, I haven’t been bullied much but so many stories like this make me sad. People see the wheelchair first. Anyway, I’ve learnt not to care what others think, in fact I stare back at people now to make them feel uncomfortable. Anyway, I hope you can live a good life and that you can conquer that anxiety!!! I can’t relate to that issue so I guess that’s all I’ll say as I don’t want to judge. Mental illness needs way more respect than it gets.
She is so depressed, you can see all the pain in those beautiful eyes. That's a hard age, you're trying to find yourself and emotions run wild. I hope she finds a person to trust and let it all out. It will get better. 💜
She's so freaking gorgeous !! Wow girl is beautiful blessings to you
WOW!!!! Your photography is AMAZING!!!! You are stunningly GORGEOUS!!!!!! So happy I found your video's!!
What a gorgeous young woman. Incredible story brought tears to my eyes. Stay strong your one amazing person
People are staring at you because you are so beatiful.
I have SMA (Type 2)... And I know how it feels when people ask what happened. Usually people often stare at me, especially little children that ask "what happened to him". Alot of people don't reilize that... I'm a normal boy. They judge to fast. Stay strong ❤
BUT of of and
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I have sma type 2 also.
You are so so beautiful! Be proud of who you are and the way you are, you can do whatever you want to. I too was badly bullied at school and suffered from bad anxiety issues as well, my heart so my heart goes out to you sweetheart. Glad to hear you could be getting some treatment for your awful condition, I keep my fingers crossed that this will happen very soon. Keep smiling and taking your amazing photos. Love to you and your family xx
You have a bright future ahead of you,keep those photos coming and maybe one day you could open up a photograph shop.
Thanks for watching David 😊
You are so talented and beautiful...!! Just focus on all the wonderful things you could do. Each one of us is disabled one way or another and some are much more visible than others.
So true.
I think people look at you because you are so pretty, and I’m not just saying that. If you weren’t in a wheelchair you wouldn’t give it a second thought. Be strong beautiful girl! Plus very talented!
Thank you for thks documentary. I felt so identified with every single aspect of her life. I also SMA 3. It made me emotional.
Watch squirmy and grubs on UA-cam.shane is in his 20s and has sma and can do alot due to his spinraza injections.
Luna Yes !!!!
@Bob 1 Sweetie, when you tell someone about a new medication and where they can find someone that has success with that new medication, of course it is going to be someone with the same condition 🙄 That is nowhere near "grouping people together" that is called trying to help.
@Bob 1 Btw, I hope one day you will be able to see beyond a person's skin color...
Bob Bob Bob-take a breath. There a new medication that halts the progression of the disease. Shane Burkholt has a podcast explaining his improvements with spinraza. I watch squirmy and grubs too. It’s ok Bob
Luna I absolutely love them
I loved watching your story Noel. You are an incredible person and super cool. I think that behind that cheeky smile there's always been a very confident, caring, positive, and successful person. You WILL be a very successful photographer if you keep at it. You're very talented! Thanks for being brave enough to allow them to film your story. It's a wonderful story and I'm happy for you and the bright future God has planned for you!
Noel i don't know if you'll see this but this is the most inspirational video I've ever seen. It was so good to see your beauliful smile at the end. Keep taking photos, you're so talented
Noel , I guess some people may stare at you because of your wheel chair. However some may stare because you are a beautiful looking girl. You have a wonderful spirit and insight into life for such a young person Xxx Ps Photography is great
So lovely! What an inspiring young woman
Shes so beautiful inside and out. I wish this young lady could actually see and believe it but she is still young. I hope she realizes she has so much to look forward to in the future.
What an amazing lady! Her challenges are many but her strength is more and she has a mind filled with wonder it seems and that's an amazing this to have...always keep your head up and teach others that your value is always in your spirit!
I think by you sharing your story you've helped others come out of their shell! You are such a beautiful person.. don't ever look down.. 😊
omg, she’s so beautiful 😩
School are the hardest years of your life, when it comes to nastiness.
Now you are in the real world as a adult, even tho you are still a teenager, and so are with the older people so your disability is accepted more.
You are a very pretty, talented young lady and you be proud of who you are and how far you have come.
Best of luck with your photography as i think you are amazing.
I just wanna give her a big hug
You have SO much to offer the world. Be yourself... be beautiful
You are an amazingly strong young lady. Your wheelchair is part of you and who you are. You are also an amazing photographer keep going.
Noel seemed to get more confidence and positive after the surgery. Best wishes, love and blessings to her and her family
Beautiful girl. Beautiful work. Amazing woman. You are a leader, take that role!!!
hello Noel !!! I am so impressed by your story I decided to say hello . My wish is to empower you even more than you already obviously are !!!! You go girl !!! Your photography skills are shiny and bright just like your future . Dont forget to jump in front of the lens more often yourself as you are incredibly beautiful intelligent subject that im sure millions of fans around the world want to see !!!! Stay strong beautiful lady !!! Keep the faith !!! the internet can be a wonderful thing !!!
Noel you are so incredibly smart and stunning. Your photography work is amazing. I don't have to qualify any of those statements with "for somebody with a disability." Jus give it time. Your peers will eventually mature and look back and realize how foolish they were and how they missed out on knowing an amazing human being.
You are alive, you are still here, you are beautiful on the outside and inside! You have struggles of course but you are a wonderful person, you are so creative you have so much going for you! This is who you are be proud of that you are an amazing person!
Howdy from Kansas, UAA. Good luck in all your future treatments and endeavors; I know your will do great things with your life...your story is very inspiring
Noël you've more beauty and talent in your little finger than those small minded people that used to tease you will have in their whole lives. Bully's are like trolls on the internet. Sad people with little better to do.
Our daughter had spinal fusion surgery last year for a 100-degree curve due to scoliosis. It's one heck of a surgery and I'm glad it's behind us. Thanks so much for sharing your story!!
She is just so beautiful... inside and out.
Noel Is GORGEOUS and I'm SO glad to see how Her Self Esteem & Confidence Have Increased~ SHE SHOULD BE EXTREMELY PROUD OF HERSELF & HER ACCOMPLISHMENTS! SHE'S A FABULOUS PHOTOGRAPHER, AND I SEE HER GOING FAR IN LIFE... I wish her ALL THE BEST!
Wow! Your photos are awesome! You have a great creative eye and skills 😊 Love your dress up and grunge makeup too. You are wonderful, don't forget that.
Just a note, I think it's great that the producers managed to get interviews with different individuals who suffer all different kinds of illnesses because 1) you learn what the illness is about, 2) how great they still are as people and 3) how thankful you can be if you were fortunate to live a healthy life so far, because there is so much out there that get a hold of you and will change your life completely
The one thing you have that the bullies do not, you're authentically beautiful. In spite of anything you might have heard, your true smile comes from your heart and is transmitted through your eyes.. Some man is going to be very lucky to wake up every morning and see that beautiful smile.
You are a beautiful girl and your pictures are fantastic; I wish that my roommate could work with you cause she's been a professional photographer for the U.S. Army despite her being deaf.
You are so beautiful, and I love your pictures. I think you will be famous one day for your view of the world through the camera lens. Best of luck!
Great job from the parents. Especially the mom.
True.
I wish her all the best with this new treatment
Please don't give anyone your power,, don't let them drain your emotions and individuality keep them strong in yourself they're yours they belong to you, be your own captain and your own cheerleader and become spiritually strong because that's where you get the most strength and endurance as a human
She's absolutely beautiful. Awesome!
What a beautiful young woman you are. Keep positive, keep going, keep.....being you
You are an amazingly strong person inside and a very talented photographer
I love your photography, so talented.
Kids are probably asking their parents what's wrong with her because she looks so normal. She doesn't look like she belongs in a wheel chair. Besides that she's probably getting looks because she's beautiful.
Right?! I though the same thing. Like she's really pretty.
Sadly in some small towns where there aren't many disabled people, kids can be quite cruel.
There is no look someone has to be in wheelchair. So many conditions- including some i have cidp and pots- mean you may need a wheelchair but it won't nessisarly affect how you look.
Noel, you're a beautiful & amazing young woman! And you're sooo talented at photography! You should totally go professional!
Thanks for watching SuperMissblueeyesz, hope you enjoyed!
Love your photos
Great video, I am also in a chair. I have cerebral palsy and hydrocephalus
Jesus can heal you that's NOT an understatement. He is amazing at healing people.
uKnow I’m a Christian and also a chair user. Jesus loves me just the way I am. I am happy and don’t mind being disabled. I’ve got a great life and have met some incredible people because of it. I pray that YOU are healed because it’s not what you look at, it’s what you see.
@@HighTen_Melanie I am glad for you to enjoy being in a chair, but in general I don't doubt many people would want to be in stuck in a chair. A chair user? I don't know what that is. Jesus healed many people from debilitating diseases. In no way is He not able to heal today the same way he has done over years. If you were born being in a wheel chair it's different then if you got into an accident and now have to be in a chair. Everyone's perspectives, needs, wants are different.
Strong girl! Wish her big success
She is so beautiful and has an amazing personality to match. I hope they find a cure ♡
Whoever bullies this beautiful amazing girl you better believe karma is coming back to you in a bad way. Noel you are incredible! No one looks and you and sees anything besides all encompassing beauty. You have a beautiful full life ahead of you.
beautiful and talented. that' s art! Go, girl, you are the Muse and the Poet, you are subject and object of yourself. your pics are AMAZING. I'm sure i will see your work on nyc museum one day. i wish you art, and peace in your heart.thank you for sharing your art. God bless you.
She is so stunning. Wow!
I want to be Noël’s friend, she seems so amazing and so talented. She is just your regular teenage girl and loves the same things everyone else does❤️ She has so much potential as a photographer and I think her story and what anxiety she deals with will be a very powerful story she can share with other kids like her around the world.
Rooting for you Noël!
why not be a mentor and sister
People probably stare because of how beautiful she is, her eyes are mesmerizing
Eres hermosa y fuerte y podrás con todo. Es admirable tu fortaleza, mil gracias por contarnos tu historia. De verdad que lo valoro muchísimo, un abrazo gigante desde Colombia.
I feel an older presence with this girl..a small stature lady with false teeth. When I see this lady standing beside her she shows me a star. You will be fine sweety...this kind hearted woman loves you immensely...she also conveys the feeling that you shouldn’t worry about the bullies, they are hurting too. You have a great talent.. please continue to share your amazing work with the world.
Oh my. Please stop playing with necromancy & communicating with demonic entities. They are deceivers and have been around since the beginning, so they have a lot of knowledge, as they watch people & communicate with one another in the other realm. When we die, we know nothing, the Bible tells us so. We go into a sleep until Jesus returns, to awaken & rise us all, giving us new bodies accordingly. Stop letting Satan trick you, by giving you powers and making you feel special. That's being egotistical and once you let these demons in, unless you cast them out, in Jesus's Holy name, they can take over and eventually reek great havock in your life. They can utterly destroy you. They offer you rewards in the beginning, but the Devil always comes to collect. Please repent. Every knee will bow.
The strange thing is that her disability is not the first thing that I noticed about her, IT IS HER BEAUTY!!!
She's very talented.
I can relate to this video so well.. I have SMA
Type III
Thanks for watching Ken Leon 😊
Your very welcome, We always overcome and tend to strive harder than most although some may not see it.. Hang in there I do....
Your beautiful and remember that people that bully others are not happy with themselves and they are probably jealous of you because your so pretty and seem like a cool person. I hope you can realize this is the truth and just love the beautiful human being that you are.
This is heartbreaking about her high school experience. I would have been friends with her. She is still an amazing and beautiful person
Beautiful woman Beautiful mind beautiful person hope you have a beautiful life
She is so beautiful and talented.
Noël, you are beautiful and your photography is brilliant. You have parents that love and support. You will do great. From one wheelchair driver to another, 👍🏼✌🏼❤️♿️.
Amazing young lady!
Who bullies a girl in a wheelchair!?
The hacker named 4chan would
You'd be surprised. And gawking openly is ABUSE too.
I'm a DSP and my job is getting blind and Crippled autistic etc out in the community...so I know. People really are clueless
Miserable people.
Jake Paul, Logan Paul, Belle Delphine, and Pewdiepie followers.