Posted by: The Sumaira Foundation in NMO, Voices of NMO
My first NMO symptoms hit three years ago when I was 9;To be fully transparent, I don’t actually fully remember that time very clearly. In January 2018, after having a blast skiing in Steamboat, Colorado with my family, I woke up with extreme fatigue, nausea, and dizziness. Previously, I was an avid traveling lacrosse player, and even when I had a slight headache or sore throat, I would still rally to get myself out of bed each morning and to go to school and practice – until that time, I couldn’t. After being dragged to several doctors and an urgent care clinic, my pediatrician finally said to us, “go to the hospital”.
It was at that moment when I knew something was wrong; I was scared. That’s when I knew this was serious and that there’s no joking around. With my small hand gripping tight onto my mom, hardly able to walk, we stepped into the ER. This was by far one of the most uncertain and scary moments in my life.
My mom, who is a radiologist, did all she could to get me on that MRI schedule. I was extremely lucky to have my mom’s friend be the one handling the MRI schedule that day, and he fit me in late that night, taking the time to look over my scans — something for which I am so grateful to this day. When he showed them to my mom, she took one look at them and knew it didn’t look right. I was scared – scared for myself, scared for my mom, scared for all the doctors who didn’t know what to do with me.
In fact, there was a lot of it. That’s when another symptom started to come upon me: I lost my ability to swallow saliva and one of my lungs partially “collapsed”.
Thereafter, I was admitted to the hospital (which I am so thankful for). I was started on fluids and had a nasal cannula and feeding tube inserted in my nose. Because my tongue had trouble moving on its own, I wasn’t able to speak very well. When my mom handed me a marker and a whiteboard to write what I wanted to say, I couldn’t grip the marker. Somehow and incredibly, my mom and I had a way of communicating that wasn’t through words. When I needed to use the bathroom (at first they had given me a bedpan which I flatly refused, which moved to a commode that I also despised) I could signal to her and she’d know instantly. She has been such an amazing advocate for me, especially when navigating the chaos of the hospital.
In the next week, I was officially diagnosed with NMO, and was started on plasmapheresis through a catheter in my groin, as well as Rituxumab, which I now have infused every six months. Friends, family, teachers, and many other amazing people worked a miracle to support me, often dropping off meals for my family at home, and sending cards filled with love. We actually decorated my entire hospital room with all the cards!
These people were my light, my angels: people who always know when you need them most and are there for you in the right moments.
After about a month of treatment, I was finally able to go home. I was initially supposed to go to a rehab hospital, but after a long discussion, I was able to go home instead. Going home for the first time in a month was the most welcome experience!
Since that experience three years ago, I went on to write a book, My Hospital Story, to help other kids going through similar experiences. In the hospital, I always wished I could talk to another kid who just “gets it”: who knows what it feels like to have endless IVs and treatments and feel scared and alone.
My book consists of journal entries that describe my day to day experience in the hospital. Each chapter begins with a quote, and each chapter ends with insight and advice that I gained from that specific experience. I want other kids to know that they aren’t alone in their struggles, and I guess I want myself to know that, too. Not only did I want to share my own story, but I hope that it helps many other children to share hospital stories of their own. I have learned so much about myself and my life since then, and I wanted to share my story and newfound wisdom with the greater community.
All proceeds of this book will be donated to the Neurohospitalist Fund SPF 44526 at Children’s National Hospital, a research fund to advance care for patients with neuroinflammatory/neuroimmune conditions, including NMO.
I was also recently featured in a short segment from the CBS Evening News: https://www.youtube.com/watch?v=c7-4NQ2i-7g
I only recently found The Sumaira Foundation but I am so glad that I did! Their work to support the NMO community is just amazing. I am grateful for all they do. I am already so inspired by the many other NMO stories, and I hope that more people continue to share their own. Thank you for illuminating the darkness of NMO.
