My whole life I've been healthy. I wore my seat belt, wore a helmet, looked both ways before crossing the street … I did everything in my power to be safe, to be healthy. But unfortunately for me, I couldn't stop the inevitable. There was nothing I, or anyone could do to stop this. Nothing.
Nearly four years ago – Thursday, Feb. 2, 2012 – started just like any other day; I did, however, wake up with a back and stomachache, but nothing too weird. I wasn't worried about it. Why should I?
At around 6:30 AM, I walked over to my mom to say goodbye to her before she left for work. As I was walking away, I began tripping over my feet. I had just felt "off."
My mom told me to stay home from school, but as the stubborn 14-year-old I was, I started getting ready for school anyway.
I went into my brother’s room and noticed my pain was getting more intense. It was 7:15 AM at this point. I walked into the bathroom and paced around. Suddenly, I had this urge to sit down.
Five minutes later, I couldn't feel my legs.
I couldn't move them, I couldn't walk anymore. Then I started not being able to sit up by myself, either. It was that fast. Just five minutes.
The next thing I know, I'm being carried outside, where it was absolutely freezing. But I didn't feel cold. I didn't feel anything. I was numb. I wasn't scared, nervous or anxious. I felt blank almost. A feeling I can't quite describe. It was a feeling I had never felt ever before. Then I was on my way to the emergency room. And just like that, a perfectly healthy 14-year-old girl who never even had blood work done was now paralyzed.
I was in spinal shock, so I was calm and thankfully I don't really remember much. After many tests I was diagnosed with a rare inflammatory disease; it caused injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction (the part of the nervous system that controls involuntary activity, such as the heart, breathing, the digestive system, and reflexes).
We have no idea how I got it or why my body attacked itself. I started treatment, IV steroids, plasmapheresis, IVIG and intense physical and occupational therapy. I stayed in the hospital for nine weeks.
I left just as I came in: a paraplegic.
Through these past few years I have had many surgeries, meningitis, blood clots, allergic reactions, various different medications to try to soothe my intense pain, blood transfusions, various infections all over my body, septic shock, two wound vacs, Addisonian crisis. I have severe nerve pain from neuropathy, I had neuromuscular scoliosis, a spinal/pelvic fusion, adrenal insufficiency, cervical myelopathy, kidney and bladder problems, several central lines, IVs, blood tests, shots, I have had too many hospital stays to count, lots of MRIs, CAT scans, X-rays, and every test you can think of I have had.
Even though it hasn't been easy and sometimes I just don't understand why this happened to me, I wouldn't change it. Being sick has made me into a better person. I've fought really hard to become the person I am today.
In May 2014, I had been home for a little under two months after a previous two-month hospital stay. I was getting some tests and my hematologist, one of my favorite doctors I have and will ever have came in, hugged me and asked if I ever thought of applying for a Make-A-Wish.
I changed that day.
Just two months before that, I was very sick, I was very afraid I wouldn't ever even wake up again or grow up and here I was, talking about going on a trip that I could've only dreamed of in my wildest dreams. At the time I had no idea how much different my life would become.
By September of 2014, my wish granters Amy and Bonnie came to my house to discuss my wish. I was absolutely thrilled to get started with planning my dream vacation.
I wished to visit Hawaii. But mostly, I just wanted my whole family to be together.
Just six months before, I felt like I couldn't look ahead. I was afraid to think of the future.
Because, I honestly didn't know if I'd have one. With being sick, you just never know. But my wish helped me finally be able to look ahead, to get excited, something I hadn't done in a really long time. I learned you can't live your whole life being terrified of what might happen tomorrow, it just takes away the happiness of today.
My doctor, Dr. Moss, has no clue how much it meant to me that she referred me for a wish. I absolutely adore her and she is one of the best people I've come to know. She is not just a doctor, she's a forever friend.
In March of 2015, I went to Oahu, Hawaii, where I went swimming with dolphins, zip lining and to a luau.
No matter how bad my day may be, I know I can always go back to Hawaii in my dreams.
The warm sun on my face and turquoise water, the freeness of zip lining and the genuine look of happiness on my families faces. This is a family that has been knocked down over and over. I hadn't seen them look that happy in years. It made my heart sing.
Since I am a complete paraplegic with a fused spine, I thought going zip lining would've been too physically demanding or just plain out hard for me to do. but thanks to Make-A-Wish and Climb Works, I did it. It was something I wanted to do way before I got sick. Something I'll never forget. It was the best day of my whole life thus far.
And after my trip, the fun wasn't over. In April, I was honored at the Evening of Wishes Gala in Connecticut for my blog, my writing, and my fight. There was videos made about me and my trip. I also had a beautiful dress made by the amazing Kathy Faber.
All of this goes back to that one day in clinic. My doctor, Dr. Moss, changed my family. She helped me through, she helped me smile again and smile from deep within.
If I could tell any person one thing about Make-A-Wish, I'd say that they have given every wish child and family so much more happiness.
They get to forget about sickness, the hospital, tests, doctors and stress, just everything for a little while. It helps you way more than you could ever think.
Make-A-Wish makes everything as stress-free as possible, and I know I've said it before and I'm saying it again: They changed my whole world, my mindset … Make-A-Wish changed me. In the last year I've been able to look beyond my disease and pain and know that I was given a really special gift, a gift you can't really say thank you for, it's impossible to do so. But I will tell you, I will do everything in my power to make sure Make-A-Wish, my doctor, my wish granters and everyone I've met through all of this, know how very thankful I am for them. For giving me this happiness I never thought I'd have.
These past few years have been a long, hard struggle, a constant roller coaster with my health and well being. An awful lot of things had to go terribly wrong for me to end up in the right place. And that place? That place, is right here.
I am 17, I love to write and I want to write books that unlock the traffic jam in everyone's head. My name is Alex and I can truly say this past year has been the best one yet. I've had more happiness than I even know what to do with, and that's all thanks to Make-A-Wish. I have learned I can do anything and you'll just have to watch me.
Thanks to all the medical professionals - doctors, nurses, child life specialists, social workers and more - who take the time to refer kids like Alex for wishes. By understanding what a wish can do and making time to refer them, you create a chance to lift their spirits and help them stay strong through their medical treatments and challenges. Find out who else can refer kids, or even fill out an referral inquiry today!