2002
When I was born (April 4th 2002), doctors diagnosed me with Pulmonary Stenosis and a hole in my heart. Eight months from the day I was born I had to have emergency open heart surgery on December 4th 2002. My mom likes to say that this first surgery was my re-birth bc without it I wouldn’t be here today. Many doctors put doubt into my mom’s head that I wouldn’t make it, but together we defied the odds.
2005
When I was three years old, I had to have hip surgery for something called Hip Dysplasia. I had to wear a body cast for six weeks and even though this wasn’t a life threatening situation, this was a very difficult time for my family. HD made my hips off centered and walk with a slight limp. I’ve always been self-conscious of the way I walk but each step I’ve taken has molded me into the girl I am today.
2015
At the age of 12 I was diagnosed with severe scoliosis, due to my rare condition I was transferred to a team of doctors who specialized in this region. My spine curved rapidly in the shape of an S. I ended up having my first spinal fusion surgery on February 10th, which was a few months later from the day I was diagnosed. The doctors only operated on the top half of my spine because I was still growing. This was the start of my new journey.
2016
I ended up having another spinal fusion surgery on June 30th, just one year later to operate on the bottom half because my spine kept curving and shifting causing tremendous pain. During this surgery, one of the staples used to close my incision opened causing blood to leak out. I had to be brought back to the operating room to close the staple. I had to stay at the hospital for a week.
2017
I was born with a pink tissue on the side of my right eye which is called a dermoid. Growing up I was so self conscious and embarrassed of the way my eye looked. Many kids would point and ask me what’s wrong with my eye and it truly made me feel self conscious. August 28th, Just a few days before my sophomore year of high school I chose to have it removed. This surgery was one of the easier operations but had so much meaning. Being able to choose to have a surgery really boosted my overall confidence and is something I had control of.
2018
All of a sudden my legs started to decrease in strength and my walking ability declined due to my severe case of scoliosis. Although my back was fused, I had severe pressure on my legs because of my spine curvature. My legs declined so fast that I only had four days to prepare for a spine surgery that wasn’t usually performed. On November 13th my doctor had to shave down the bones along my spine to take some of the pressure down. I was pulled out of school for my entire junior year because I was broken down mentally physically.
2019
Just three months later I found myself having my fourth spine surgery. During my last surgery my doctor removed a few screws and rods from my spine because they thought it could sustain without it. Removing the screws and rods caused my spine to shift forward 10 degrees and my spine started to collapse. On February 19th I was fused from my neck all the way down to the bottom of my spine to make sure there was no movement. I had to wear a neck brace for 12 weeks so my neck could heal safely. This surgery brought many complications.
2020
During an MRI of my spine, the radiologist found an aneurysm in the lower portion of my brain which triggered many headaches. I now had to be seen by a new specialist. Since my aneurysm was larger than expected, surgery was needed immediately. My surgery date was January 27th which was also during my senior year of high school. For this surgery I had my aneurysm coiled which lasted four to five hours. I was out of school for a week.
2020
Although my brain aneurysm was coiled, I was still experiencing numerous headaches which started to become unbearable. The problem was that my aneurysm began to leak through the coiling. The morning I went in for testing, the doctors realized that the surgery needed to be redone. That same day I went into surgery on May 11, which lasted 12 hours due to complications.
Questions
01.
what's your condition?
02.
how do you stay confident?
03.
What’s the hardest thing about having health issues?
04.
What’s something helpful you’ve learned from your journey?
05.
Why can’t your scoliosis be fully corrected?
Answer
06.
Will you ever be able to walk without your crutch?
07.
How has your journey affected your mental health?
01. what's your condition?
At the age of 14 I was diagnosed with Epidermal Nevus Syndrome. I was told at the time that this condition was so rare that only one other person in the world was known to have the exact same syndrome. For me, I was right side affected meaning all of my health issues were related to the right side of my body. All of my surgeries are due to this condition.
02. how do you stay confident?
I stay confident by reminding myself that I am unique. I may look different and have encountered many setbacks but that’s only a portion of my life. I surround myself with positivity and when I go outside I lift my head up high because not everyone could have gone through what I’ve experienced and still carry a smile on their face. I believe that most of my confidence is carried by gratitude that I was able to get another shot at life. Sitting in a hospital bed and hearing the risks that may come from surgery is absolutely terrifying and hitting rock bottom has only made me want to fight even harder to step out and showcase what I’m made of. Once I knew how quickly life could change I channeled that into fuel to not take another second for granted.
03. what's the hardest thing about you having health issues?
The hardest thing is seeing how the world is not set out for those who live with disabilities. Society has painted the world only one way and that is for able bodied people. People can be cruel and once they see someone who is even a little bit different they stare and make fun of them because “disabilities” are not showcased in everyday life. It can be difficult going out in public because instead of a ramp there are stairs, instead of doors that open for you there are pull/push doors, and there’s sometimes not enough handicap parking spots. Why do we have to pay the price for something that should be accommodated for? Feeling like an outsider simply because I don’t see anyone who looks like me on tv, or someone I can read about in a book. The stigma that “disabled people can’t do things” is utterly wrong and hurtful because it’s not true. I believe that these opinions are one of the worst things that we have to live with all the time. Always having to prove myself to the world that I can hold my own and don’t need people to feel bad for me is exhausting. I just wish that society could be open minded to everyone in the world, not just the ones who fit their standards.
04. WHAT’S SOMETHING HELPFUL YOU’VE LEARNED FROM YOUR JOURNEY?
From an early age I was able to understand life. Sometimes things are going to get tough and you’re going to have to figure out ways to push through. I started to not worry about small things such as parties or being the prettiest in the room because I was experiencing real life situations at a young age. I look at life half full instead of empty because there is so much to be thankful for. Instances like when we quickly had to move and seeing my nana sick in a hospital has really shaped my outlook on life. Even when life is hard I try to find one thing that I can look forward to because if not I will be giving in to the negativity. It was difficult for me at first to become a positive person but when I started to embrace my differences I found that my body, mind, and soul were healed because I shifted my attitude towards life.
05. WHY CAN’T YOUR SCOLIOSIS BE FULLY CORRECTED?
Due to my epidermal nevus syndrome I have pieces of tissue that sit along my spine which were pushing and shifting causing my scoliosis. Although this is the reason for my scoliosis, this is not how scoliosis is naturally formed. This caused major pain and discomfort leading to my first spinal fusion surgery. Through my spinal surgeries my doctors were able to straighten my spine only a small amount because of risks. Due to the tissue on my spine I am unable to be fully corrected, removing the tissue could cause more health issues and pushing against it could be detrimental to my spine. Even though I’m not fully straight, my spine is fused from my neck all the way down to the lower part of my spine so there is a less chance of movement.
06. WILL YOU EVER BE ABLE TO WALK WITHOUT YOUR CRUTCH?
I always like to say “if I did it before I can do it again.” Before my journey I was active and able to walk independently. I’ve gone from a wheelchair to a walker to two crutches and now to one crutch. The next step after this will be to walk independently. In physical therapy this is what we’re working on and I've been improving well. I would like to say yes, I will be able to walk without my crutch in the future but right now that is not my main focus. If it happens, it happens and I will be beyond proud of myself.
07. HOW HAS YOUR JOURNEY AFFECTED YOUR MENTAL HEALTH?
In 2018 I was in a really bad place. I didn’t want to get out of bed, I didn’t want to go to school, and I didn’t want to live life. I didn’t know what my purpose in life was and I felt like I deserved whatever was going to happen to me. My body was at its worst and I was enduring pain everyday. I was so weak that I could hardly walk to the bathroom. During this time when I first started to experience a decrease in strength, I had the worst anxiety, depression, and outlook on life. I remember hating myself and everything around me and with those thoughts my body started to get worse and worse. I learned that the way I felt about myself really impacted my body strength. When I have negative thoughts my body is sore and achy but when I have positive thoughts I feel strong and powerful. Mental and physical health go hand in hand, if one is not looked after then the other will start to follow that same path.
