Growing Up With Spinal Muscular Atrophy

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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[@cutepumpkin4744]

The girls at school were probably just jealous because you’re pretty.

[@rissadawn2047]

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

[@robertvasquez8684]

She is pretty

[@ddb1580]

. . . . and talented.

[@olivedog1880]

Yep. She’s beautiful, and they can’t stand it. Pretty vile

[@pagandeva2000]

I don’t get people thinking that someone with a disability is something to bully them...horrible!

[@khonkhosilelihle7414]

True ey.

[@Cdonoflio]

Honey maybe some of the staring is because you are so beautiful

[@martinemikita9281]

Right?!??! SHE'S GORGEOUS!!

[@brielleanyez7113]

Absolutely!! I thought so as well, shes gorgeous!!

[@zakimerxero3771]

Exactly.

[@wc5436]

Absolutely beautiful inside and out!!!

[@motomom547]

She is beautiful ❤️

[@eileen1820]

This girl is so, so beautiful. Wow she's gorgeous.

[@meganhenry5795]

Whoa! No kidding.

[@southerngal7899]

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. 🌷

[@pankajgusain6312]

Lord she is beautiful and so strong...I hope she gets all the happiness

[@Jaisee14]

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*

[@bigbosss7806]

Who can bully such a precious young lady ugh

[@grayskindablue]

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. ✨✨✨

[@09makena]

I watch them. They are hilarious and such an inspiration. Anyone with a disability could benefit from watching them.

[@catherinedrew203]

Yes! I think she would be a great friend for he and Hannah

[@carlybrancato649]

Skyler Gray I love squirmy and grubs!

[@FrugalMomHolly]

I love Hannah and Shane

[@s.scirocco4411]

@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.

[@Earle63]

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.

[@Goober89]

It's unfortunate she has low self-esteem because of her situation. She's gorgeous and cool, I definitely gotta crush

[@MrBonger88]

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

[@echofoxtrot2.051]

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!

[@idafulk8922]

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.

[@sandracmyers]

Beautiful girl, beautiful family, thank you for allowing us to witness your strength.

[@davideaton9965]

You have a bright future ahead of you,keep those photos coming and maybe one day you could open up a photograph shop.

[@AttitudeLive]

Thanks for watching David 😊

[@jexikavindictive]

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.

[@AttitudeLive]

Thanks for watching Jessica!Hope you enjoyed our channel!

[@Pimporly]

Right on girl live get better with disability when you get old no doubt about it

[@ceemeebee15]

I also have sma type 2, I always wanted to know ppl with the same thing just to relate

[@adamburke1372]

SMA2 here. 33m/Aus. It absolutely gets better as you all grow up.

[@sarahnicole4223]

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. 💜

[@easyspanishwithluz6861]

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.

[@user-dr5jv1wk4j]

So true.

[@mackids7122]

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.

[@MonicaRoy6156]

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!

[@jameskey40]

What a gorgeous young woman. Incredible story brought tears to my eyes. Stay strong your one amazing person

[@moraana582012]

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.

[@stephaniec4114]

So lovely! What an inspiring young woman

[@cpchick81]

Great video, I am also in a chair. I have cerebral palsy and hydrocephalus

[@JesusGodHolySpirit3]

Jesus can heal you that's NOT an understatement. He is amazing at healing people.

[@HighTen_Melanie]

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.

[@JesusGodHolySpirit3]

@@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.

[@eviesabo4871]

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

[@AlwaysBelieve777]

Beautiful girl. Beautiful work. Amazing woman. You are a leader, take that role!!!

[@SpiritFox17]

Noel seemed to get more confidence and positive after the surgery. Best wishes, love and blessings to her and her family

[@kathryncollins713]

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.

[@poisonlady1965]

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!

[@leilanil476]

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.

[@eileen1820]

Right?! I though the same thing. Like she's really pretty.

[@09makena]

Sadly in some small towns where there aren't many disabled people, kids can be quite cruel.

[@kookoo4pandas]

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.

[@FairyKat1759]

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!

[@lexi7802]

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.

[@iveyivey1298]

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

[@bethglenmaddie]

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!!

[@Luna-yj6zh]

Watch squirmy and grubs on KZbin.shane is in his 20s and has sma and can do alot due to his spinraza injections.

[@josefine635]

Luna Yes !!!!

[@republican4u2nv78]

@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.

[@republican4u2nv78]

@Bob 1 Btw, I hope one day you will be able to see beyond a person's skin color...

[@victoriatucker6271]

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

[@rissadawn2047]

Luna I absolutely love them

[@freddyferrillo9704]

Great job from the parents. Especially the mom.

[@khonkhosilelihle7414]

True.

[@joraston]

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.

[@madelinclaireg4446]

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!

[@danilojosecanonizado8144]

why not be a mentor and sister

[@meganhenry5795]

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.

[@saragales1622]

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

[@DaniAMH121]

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.

[@lisacorimbi5045]

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.

[@dklord1]

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, 👍🏼✌🏼❤️♿️.

[@counterculture3687]

I have SMA 3 - it's always interesting to see someone who understands my struggles. I have a much more optimistic perspective and was mesmerized by how similar our lives are and yet how different we tiurned out psychologically. Good on her hoping for a cure! We are at a point medically where great strides are being made. Cheers Noel

[@AttitudeLive]

Thanks for watching Counter Culture, hope you enjoyed!

[@choccymeelk7]

Counter Culture hey me to I am turning 13 this year I am not in chair I strive to improve and I go to the gym with my mother and brother every single day besides Friday which I go swimming.It really changes my potential constantly I don't care to be able to run I just want to go up stairs.The only time which I really found was hard was on the first week of my new school a kid pulled me backwards and I burst my head but I love my friends. Ecause they always have my back,what I do hate is I am extremely dedicated to school work and people use me for homework and projects.I am extremely grateful for my brother because he ensures no one bullies me but idc if people do bully me I don't take them on.

[@Rawannni]

Alligator 6004 my little sister is 14 and she have sma type 3 she exercise every day but she doesn't swim , is swimming helpful ? I don't know if she can swim but she have the same type that you have can you swim easly? Please tell me after few years will she have to use wheelchair?

[@choccymeelk7]

Ra Wan extremely helpful she should start as soon as possible because I guess from my understanding there is only a limited amount of time

[@unfocused8869]

I Aldo have SMA 3, i know the struggles

[@BUCHIVELI]

The strange thing is that her disability is not the first thing that I noticed about her, IT IS HER BEAUTY!!!

[@Theforeveraloneguy]

Who bullies a girl in a wheelchair!?

[@jessehutchings]

The hacker named 4chan would

[@StarAnnasDream]

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

[@meganhenry5795]

Miserable people.

[@swallowedinthesea11]

Jake Paul, Logan Paul, Belle Delphine, and Pewdiepie followers.

[@di4ulatina753]

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.. 😊

[@hal8649]

she is gorgggg, her face is a beauty. It's sad she has low self steam.

[@anniC0711]

She is so stunning. Wow!

Noel you are so strong girl....i wish you do well and get cure....

[@jalaniehead7590]

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!

[@Bettinasisrg]

She's young so she'll get stronger. Maybe a mentor who is older but has gone through it? She's so beautiful and talented!

[@janakujawa1629]

You are so pretty and brave!

[@daphnerondeau841]

Stay strong i also have two disabilities my self one i was born with and other i got when i got sick as a child

[@davidrobertson4231]

God bless this is Teresa husband act anyways I'm a RN and I work with teenager's with this I dont even like saying it, you are so beautiful just take each day for the better if you ever want a pen pals from my teenager's they know exactly what you are feeling, much support with my teens all diagnosed with the same as you, we are here for you ❤ hugs from Seattle Washington

[@suzannemenuet947]

She is very lucky to have type 3. I have known many with type 2, and they were completely dependent on others from a young age.

[@nor4277]

You are a brave girl ,I wish you the best ,I have a curved spine ,but I am sure not to your degree ,but in pain always ,I hope your surgery will improve your life.,you are very young and very pretty young lady .

[@elishachilds8057]

Your beautiful and amazing I also have a disability.

[@juanitahuisentruit1989]

You are a beautiful girl. People often look at you because they are curious. You act so much like a typical teenage girl lol. ( not listening to your Dr. ) You have great talent not everyone can see through the eye of a camera lens and capture the emotion that you do. I wish you a happy and postive life.

[@joraston]

You are an amazingly strong person inside and a very talented photographer

[@sharonfloyd6288]

You are very beautiful. There’s actually a song because you are beautiful no matter what they say. Look that up on KZbin. I’m so happy you’re back surgery you did great. You have a very good family. And you’re talented with your camera. I think you have a full life ahead of you. Enjoy your life to the full list.🌺🌺

[@sarahnixdorf1]

Pic with leaf pile awesone, I know h I w it is when ppl ask 50 questions and then except u to know every little thing bc they dont. Ex: if they ask about moving from state to state etc. Lovely young lady.

[@ItsMe-yb7ud]

I hate the industry because there's not enough people with disabilities that are models this young lady is beautiful she needs to be in a cover of someone's magazine strolling down someone's catwalk come on people

[@burly636]

Maybe they’re just looking at her because she’s so pretty. I knew what she goes through, I could, and I had polio which affected my spine and my legs. it starts at home parents teaching their children how to treat people. my brother was hit by a car when he’s five. I know how he feels because we went through same experiences. it’s still hard for me to be around people even though I had a wonderful husband who passed away five years ago. This girl is gonna find a good husband.

[@nataliesfinedesigns]

You are beautiful and if you gave that drug every 4 months your disease will not progress. Have the fusion but do it in the right hospital. God bless you. Remember, you can! No matter what the doctors say. They said I would be in a wheelchair by 1994. It's 2019. I still wear high heels. I gave a 6 inch rod at the base of my spine. I had a 75 degree curve

[@ursulagopie9445]

She needs to meet Shane who has the same medical description.

[@lorriefinley3129]

@ Shauna Ratapu While you're in the US, maybe you can ask Noel's Doctrine, Social Workers for a referral for her for a Therapist that specializes in PTSD & uses EMDR for treatment. It would be very helpful for the bullying she received. It allows the person to recall the events without the attached emotions. I'm not a Therapist; I've used it several times with much success. I hope the treatments are going well for Noel. Hopefully she is able to continue them through the Pandemic. Stay strong.

[@macbuff81]

I hope that in the not-so-distant future we can find true cures for these and other types of degenerative conditions. This young woman is a true inspiration though I am sure would just rather be a "normal" teenager. I am always impressed by their courage as well as their willingness to show their struggle and how they overcome them. Her photography is really beautiful just like she is herself. I really hope we will be able to find a treatment for her and people like her so they can continue their passions. I do not pretend to know what it is like to be in such a condition. I also do not want to look down/pity her. I do not think she would want that. However, I do know though what it feels like to be dealing with lack of hope/depression/anxiety. It can be deafening esp. when she knows that her condition might worsen over time. It is heart-wrenching but it is also important to remember that, like she says, she is more than just "the girl in the wheel char." She seems so much older/wiser than the 15 years old she physically is. These types of conditions force young women like to grow up much more quickly. I really do hope that she will be able to stay active and that science will advance enough so that she can live a full and passionate life. Her photography really enriches this world and I hope she will continue to pursue it. We need to find a cure now! Noel is gifted with real natural beauty. Her condition has forced her to face questions regarding life that other people face when they much much older. The surgery for the rods sound incredibly invasive. For her to essentially locked in will of course help her straighten her back but like she fears, it could also trap her if a cure/meaningful treatment comes along in the future. It is nice to see though that the surgery seems to have given her confidence as well as a better healthier posture.

[@karenbeale5118]

You are a talented and gifted photographer! I too have learnt about Spinraza through squirmy and grubs and their vlogs. It is so hard that it takes so long to get access to these drugs but keep hanging in there as it sounds really promising. God bless you

[@avantgardeaclue]

This kid is stunning.

[@Santoki30004]

Such an inspirational individual it would be a pleasure to spend a day with her for real ,Wow so talented

[@hogsworthhammer9211]

She's absolutely beautiful. Awesome!

[@Asdfgqedfglo]

She is so beautiful. So so beautiful!

[@lit-xp4lw]

omg she is literally SOO PRETTY!!!!

[@lorlulu]

You could be a model my dear. You are absolutely beautiful.

[@RaikenXion]

Ive watched some videos that have affected me over these past few days, started watching 911 footage and thinking alot about all those people who died, then accident videos of people, just really tragic and now these inspirational videos. Just cant make sense of all the bad things that happen to innocent people in the world.

[@LectronCircuits]

She has an incredibly high cuteness factor. Cheers!

[@MsMichelle026]

So pretty

[@d.c5645]

You are absolutely gorgeous beautiful 💟😍💖💞 you have a strong attitude & keep up the good attitude 👍😀💟

[@freereinartstudio1463]

You have a great artistic eye!

[@ddbears3686]

She is so pretty…

[@krystal2202]

Yup i also think they are staring because she is so so beautiful!!

[@Dstew57A]

What a lovely human being..😇

[@multiyapples]

I hope she achieves all her dreams.

[@MJ-nv6mm]

You could also be a makeup artist Noel! I really enjoyed your story and would love an update of how and what your are doing now 6 years later--I will go to your facebook link

[@andrealuvshouse]

this video is 2 years old so hopefully she’s gotten help since then, but if not, look up squirmy and grubs on youtube.

[@dennisgreen7036]

God bless you guys. Hope everything is going well.

[@carlymarshmallow9958]

My brother has SMA type 3 too

[@kitkat32057]

What a beautiful young lady! She should look into modeling!

[@chelsiesabine5458]

Such a amazing girl x

[@salsabeel2860]

I have scoliosis too. I think it makes my life harder, but I don't no... I always feel that I have to adapt with ...

[@daria6834]

I have it too ,were are you from ?

[@susansollee1839]

Your mom and dad are Great ! With your talent, looks like photography might be in your future?😉💞👍 You are really lovely.💞

[@gercolt]

Your a very pretty unique young woman a lot off opportunity's open too you , one small tip ill give you is this ,look after your body well plenty excises eat healthy and drink plenty water and you will have a good quality off life, best off luck in the future x...

[@AttitudeLive]

Thanks for watching gercolt 😊

[@leslieyoung6518]

this story make me speechless cause i have celera palsy

[@corinadaschievici9002]

Gorgeous girl!

[@dougbell3279]

I think beside her intellect she’s very gorgeous 🌹🥀🌷

[@morteparla6926]

With any hope, they've started her on Spinzara.

[@jennyn5692]

I went to her Facebook; she posted on Dec. 3 that she would be coming to America soon for a doctor's appointment and that hopefully she will be starting it.

[@taquiupa]

You're such a beautiful and intelligent girl.

[@janakujawa1629]

You are gorgeous and should be a model.💚