Sammy has faced a barrage of life-threatening illnesses with the resolve and determination of a world champion athlete. She uses her scars from surgeries as motivation to make the world a better place, which she is doing through her app, inVISABLE (which, by the way, she is coding herself). She received her wish when she was in the 8th grade and it gave her the motivation, inspiration and confidence to change other lives for the better.
Tell us about your childhood and growing up in Manhattan. What did you enjoy doing, what were some of your favorite childhood memories?
Growing up in NYC has been amazing. I’ve lived here my whole life, and I wouldn’t change it for the world. When you grow up in Manhattan, independence comes at an earlier age. Unlike the suburbs, where teens have to rely on their parents to drive them around, city kids can travel places on their own. That’s something that is very unique to city life and I love it.
Some of my favorite memories are of winter in the city. There’s something so magical about NYC in December. I used to, and still do, love going to the various Christmas markets throughout the city with my mom, and seeing all the holiday window displays on Madison and 5th Avenues. After we stroll through the Union Square Christmas markets, we always go to City Bakery for their decadent hot chocolate and famous pretzel croissants. It is most definitely worth the trek!
I first met my best friend, Ellie, when I moved into her building at the age of four. Our parents forced us to go sledding together during a huge snowstorm. We went on a hill right by Gracie Mansion, the Mayor's residence, and ever since, it has been our tradition to go on the first big snow fall of the year (even though technically we are both too big to sled). Every snow day we followed up our sledding by roasting marshmallows at my house.
Ellie has been one of the best parts of my life. Having my best friend live in my building is pretty cool because whenever I am out of dessert at my house, I just walk downstairs and steal hers. Ellie is two years older than I am so she is away at college, but absolutely nothing has changed between us. We still talk every day and tell each other everything – well, I guess I can’t eat her dessert as much anymore, but that will go back to normal over Christmas break.
When did you first find out that you had an illness? What was life like at that time of your life?
I was born with a bleeding disorder called Von Willebrand disease. We always knew I had it, but it didn’t affect me until later in my life. The first time I was diagnosed with a life-changing illness was when I was seven. I was a super active kid, so naturally, the first time I experienced symptoms was while I was taking a trapeze class with my friends. I was fine one minute and the next I couldn't even climb up the ladder to the trapeze. To boot, it was my mom’s birthday and we ended up spending it in the ER. After many misdiagnoses, I was diagnosed with juvenile arthritis in my right hip and lower back. Since then it has spread to every joint in my body. To manage the arthritis, I do weekly injections of Enbrel, and take daily non-steroidal anti-inflammatories.
At the age of 11, I was also diagnosed with neuronal intestinal dysplasia (a type of pseudo-obstruction). Basically, my neurons don’t send signals to my colon so it became a non-functioning organ. After a combined partial colectomy/Malone surgery (an operation that only 10 other people in the world have had), an emergency surgery, failing the first surgery, and having one last surgery to remove the rest of my colon, I am finally doing better. On top of my three main chronic illnesses, I have five others. However, with all my surgeries and the help of 22 daily prescription pills, I am currently able to attend my junior year of high school. That is no small task as I missed almost three years of middle school.
I think the fear of not knowing what was wrong with me for so long was the worst part. I was young and absolutely terrified of the present, not to mention what my future held.
Looking back on it now, I wouldn’t change anything about the process or what I went through because it has truly shaped who I am as a person. All those months in the hospital and years that I missed school made me a much stronger person. I appreciate the littlest things in life because everything I knew was snatched from me in the blink of an eye. I am very aware that it can happen again, so I try to live life to the fullest, and eat as many cupcakes as I can while I have the good fortune of being able to eat.
When did you first get introduced to Make-A-Wish? What was your wish?
Growing up, my friends used to do fundraisers for Make-A-Wish. I remember thinking that it was such an amazing organization and idea, but I felt very removed from it. I never could’ve imagined that one day I would qualify for one. Who can predict something like that?
I was officially granted my wish right after my third surgery. I remember crying out of pure excitement when my mom told me. It turns out that for months, she and my gastroenterologist were secretly working behind my back so that I could become a wish recipient. I was in the 8th grade and still very sick. It took me a while to decide on my wish because so much was going on in my life at that time. I wasn’t in the right mindset to sit down and decide, so I waited about a year. Around Christmas of my freshman year in high school I made my wish. Being the age that I was, I thought long and hard about what to wish for. I wanted to ensure that in 30 years when I look back on this experience, I would still think that I made the right choice. (AND TRUST ME, I DID!)
My wish was to bake with world renowned entrepreneur and fashion model, Karlie Kloss, and talk to her about coding. Here is my reasoning:
1) I LOVE FOOD. Baking is one of the only things that I enjoyed and was able to continue doing while I was sick. I would bake a cake every day, eat a slice, give the rest away, and then repeat the next day. It kept me busy and entertained. Karlie also loves to bake so I knew this would work out perfectly.
2) Karlie is the reason I started coding and she has inspired me to continue it for the past three and a half years. If it wasn’t for her, I would never have had the tools or thought it was possible for an average girl like me to start something so big.
3) I love Karlie Kloss. I’m sure you could’ve predicted that, but it was definitely part of my wish-making thought process. She just seemed like a super genuine person, was doing so much good for the world, and is a great role model for girls. I really just wanted to get the chance to know her.
Tell us about the day of your wish, what was it like?
Oh gosh, there is so much I could say about that day. There were thousands of special moments that I will remember for the rest of my life. My day officially started at 7:00 am when I woke up in pure excitement. I got dressed and the limo picked me up at 9:00. I remember being so excited but having no clue what to expect. I didn’t know if I’d be nervous when I was with Karlie or if I would feel intimidated by her: I wasn’t and I didn’t.
We got to Magnolia Bakery around 9:15. Karlie set the perfect tone for the day by casually walking out of the bathroom to greet us. That obviously wasn’t planned, but we were early and it was the perfect icebreaker. The cute private room they rented out for us was decorated with cupcakes with my face on it, tons of treats, and baking supplies. Once it was time for the baking, we made cupcakes, filmed a Klossy video, joked around, took TONS of pictures, and learned how to frost like a pro. Karlie totally butchered her cupcakes and that became the joke of the day. We then got to go into Magnolia’s kitchen and see all the behind the scenes fun. EVERYTHING TASTED AMAZING.
After the baking was finished, Karlie asked if she could take us out to lunch. Karlie took Lucy, the other wish recipient, and me in her car and literally tried to sit in the middle seat. I refused because she’s 6’ 2” so I sat in the middle because, once again…she is 6’ 2”. I think that little tidbit shows just how humble Karlie really is. Going to lunch was honestly the best part of the whole day. We spent the next two hours talking about everything from funny stories, to life goals, to our favorite coffee places, etc. I made Karlie a bunch of gifts, but also got her a bracelet that said “Inspire” on it and one for me that said “Inspired.” I told her that she inspired me to start coding and all about inVISABLE, the social media platform I started for the chronically ill community. She basically cried and asked to take a picture holding hands with our bracelets.
The day ended at 2:30 pm. She wished me good luck on my midterms and asked me to stay in touch. It truly was one of the best days of my life because I got to know one of my biggest inspirations on such a personal level.
How did you feel after the wish? How important was the wish to your mood, your happiness? How did it change your perspective about your illness and recovery?
So many amazing opportunities opened up for me since my wish. I’ve gained confidence in my ability, my ideas, and myself. Karlie and I have stayed in touch and talk pretty regularly which is amazing. She’s been incredibly supportive of inVISABLE. It's extremely motivating to see all that Karlie has accomplished, and continues to accomplish, at such a young age. Much like her, I aspire to use my platform for good so it’s super cool to have someone like Karlie to look up to, almost like a big sister.
In August, I was a TA (Teaching Assistant) for Kode With Klossy. It was an amazing experience to help teach and inspire other girls my age to learn how to code. Seeing them shine over the course of two weeks was so fun and their ideas on how to help their own communities were so creative and rich. I got to see Karlie while I was there so that was a fun little reunion. Oddly enough, Lucy, the other girl who shared my wish with me, was in the class I taught. It was an amazing full-circle experience and I truly had the best time. Hopefully there is more of KWK to come next summer.
Three major things came out of my wish:
1. My relationship with Karlie.
2. The growth of inVISABLE. I remember sitting in bed the night after my wish and getting an Instagram notification that Karlie had tagged inVISABLE in a post. By the next morning, my following had doubled. I was beyond blown away and ecstatic. Those few hours really validated how important and necessary inVISABLE is. I was flooded with messages from strangers about how inspiring inVISABLE was and that’s when it really took off.
3. Self-love. I had already come really far in my journey of accepting my “sick self” and my physical scar when the wish happened, but afterwards I gained a whole new level of confidence. It wasn’t just confidence in my body anymore, but confidence in my intelligence and capability to take on the world. When Lucy was in NYC for Kode With Klossy she actually did an awesome photoshoot of my scar. She wants to go into photography so I let her practice on me.
I wouldn’t have met her if it wasn’t for our wish, so that’s a super cool connection I made through Make-A-Wish. One day, I hope to inspire others by continuing to “show off” my scar and change the definition of standard beauty. This was definitely a great first step.
I think there is a huge correlation between my mental state, and my physical health. Being so busy all the time and so emotionally invested in inVISABLE is one of the best things that has happened to me health wise. I still struggle with pain every day, but this summer I felt as close to amazing as my body will ever get.
How did you connect with (singer/songwriter) Alessia Cara?
Alessia and I originally connected over social media about two years ago. When she was first getting started, she was super active on social media and connected with fans often. We communicated every now and then. Then in April 2016, I won a contest through Music Choice. Oddly enough, my friend also won and it was just the two of us. We were told that we would be doing some sort of fan interview for their platform, but that it had nothing to do with Alessia directly. They made the two of us sing for the camera (and we can’t sing) and that’s when Alessia walked in to surprise us. It was such a fun experience and we got to spend close to an hour with her. I told her about how much her song “Scars to Your Beautiful” helped me with learning to love my scars from my surgeries and that is when we began to connect on a more personal level. She’s watched my journey over the past two years and we’ve stayed in touch. Every now and then she’ll DM me to tell me that she’s proud of me and how far inVISABLE has come.
Alessia is one of the most genuine and humble people I have ever met. She is 100% herself and it’s really inspiring and rare to see that these days. It’s been really cool to know her at this time in my life because we both get to watch each other grow at the same time. Seeing how successful she has become makes me so proud because she truly deserves it.
How did you get inspired to learn to code and get into computer programming?
My first introduction to coding was when my brother was a freshman in high school. He started coding at school and I always thought it was really interesting, but I had the false perception that it was either for guys or really nerdy girls. That all changed when I saw that Karlie was doing something called Kode With Karlie. Basically, she was giving out scholarships to girls for The Flatiron School’s two-week summer coding program. I was in the 8th grade at the time and decided to apply. I had started to conceive that idea of inVISABLE, and wanted to see if it would be possible to follow through with this idea and create it as an app. My summer going into 9th grade was the first time I ever coded. Thanks to Karlie, I learned CSS, HTML, and Ruby that summer. I built my first website and realized the true power that comes along with knowing how to code. Since then, I’ve learned 4+ more languages, including Swift, which is what I’m building inVISABLE with. Knowing how to code is so necessary these days, and even more necessary for girls. It’s such an impactful tool and there are endless possibilities to the things you can build. My mindset has changed so immensely since I was first introduced to coding. It’s not the “nerdy” girls who code, it’s the cool girls who code. It’s cool to be smart, it’s cool to break stigmas, and it’s extremely cool to use technology to bring your ideas to fruition.
How did you get inspired to start InVISABLE?
inVISABLE is a social media platform connecting the chronically ill community. It is currently an Instagram page (in.visable), but I am in the process of coding a full-fledged app that will promote community cohesion for those experiencing chronic illnesses. The Instagram page is a place for teens/young adults to showcase their illnesses in a positive light and it’s growing every second. The app will include a profile for each user, posts from the people the user follows, a search feature, and messaging. The messaging will differentiate from other social media platforms because users will be matched with those most similar to them. This unique messaging allows for users to have someone who understands what they are going through with their illness. inVISABLE works to solve many of the problems the chronically ill community faces: a lack of understanding or the presence of a cohesive community, loneliness, judgement, and disregard of invisible differences.
I was inspired to start this while I was in the hospital. I was away from my friends, family, and school for months and felt extremely alone at that time in my life. I wanted somebody who would understand what I was going through. I realized when talking with other teen patients that we all felt the same type of isolation and loneliness. That’s when I knew I had to do something and when inVISABLE was first conceived. Currently, there is nothing like inVISABLE out there. Before creating inVISABLE I searched for an app I could use to connect with other chronically ill teens, but all I could find was similar concepts for specific diseases. There is nothing for people with multiple or undiagnosed illnesses. Having a platform that encompasses many illnesses allows for users to get more support and a broader perspective on chronic life. Users can find companionship, share medical advice, and learn more about their illnesses or other rare diseases.
Finding confidence in myself through my disease also really inspired me to start this. My hope is that people who are struggling with their scars, wheelchair, brace, invisible illness, or any other aspect of the chronic life can look to the Instagram and find inspiration through their peers. I want to form a community that can both be for the people who have overcome aspects of their illness, but also those who are still struggling.
What's the dream? Where do you see InVISABLE going?
inVISABLE has the ability to change countless lives. While I continue to code the app, I want to work on press for inVISABLE. One of my biggest dreams is to be on The Ellen Show. Once the word is out, I hope inVISABLE will become THE social media platform for chronically ill teens and young adults. The chronically ill community is everywhere you look, but most illnesses are invisible and overlooked. I would love inVISABLE to become a commonly known name in children’s hospitals, doctors’ offices, and households with a chronically ill member. That is my BIG dream. If I can turn my code (that I started learning while I was sick and out of school) into something that helps countless people like me, my mission will be complete.
What's the response been from people using the app? What have you noticed from people using the app?
Although the app has not been completed or released yet, the response and anticipation has been amazing. Countless people have messaged me saying how excited they are and how necessary they believe it is. The news of the Instagram and app has gone global which is amazing to see. I’ve had features from places as far as Armenia, Germany, and the UK, and followers from lots of other countries as well.
Last question: What do you want to be when you grow up?
That is a great question that I am still trying to figure out. As of now, I think I want to go into pediatric psychology. I’d love to do pediatric trauma therapy or pediatric oncological social work. Over the years I’ve bounced back and forth between wanting to major in pre-med or psychology in college, and currently I’m leaning towards the psych route. I definitely want to minor in computer science so it’d be cool if I could combine those two paths in my future career. No matter what, I want to continue to help the chronically ill community and pursue coding. Those are two of my biggest passions and not something I will ever be able to let go of.
Learn more about Sam's app inVISABLE: https://www.invisablewestand.com/
Follow inVISABLE on: YouTube: https://www.youtube.com/channel/UCRHXVQjQCyqtGpugHL1X5bw
Follow Sam on Twitter: @SamanthaPaige31