I was a regular nine-year-old kid one day going skiing with my family, playing in the snow and eating s'mores by the fire, then practically over night I developed nausea and hiccups.

At first, my parents didn't think too much of it but when it progressed to dizziness and extreme fatigue, we all knew something was very wrong. When I went to the emergency room that fateful night in January of 2018, I didn't think I would be there for five weeks. 

My world completely turned upside down. When I finally got home, nothing was the same.

My Story

meet Nell

When I came home from my long hospital stay in the pediatric intensive care unit, I was weak and in a wheelchair. I couldn't chew well, so I was eating a lot of mushy foods and lots of milkshakes to get my weight up. I had lost 20 pounds! That's a lot for a nine-year-old kid! Because I was so weak, my mom had to help in and out of the tub. She helped me get dressed. I even had trouble brushing my teeth! It felt like I was a toddler all over again.

I hated it so much. It seemed like all of my friends were having so much fun without me, playing lacrosse, going to school and having sleepovers. I couldn't do any of that. I didn't know anyone who was having an experience like mine. Because I liked to read, I searched for books about tweens in the hospital with a rare disease but could't find any. I guess because it's rare, haha. 

But seriously, I didn't know who to talk to. My brother and mom and dad were great, but it wasn't the same as talking to a friend. So that's when I started writing in a journal which then became a book. I guess you could say that I kept myself company and my journal became my new bestie.

The Longer Version

I love cooking and baking

I have Four cats!

  • Zena, the black tortoiseshell with tan patches
  • Suzie Q, the silky all-black cat with green eyes
  • Jingy, our old tabby
  • Jack-Jack, the big black and white boy

dessert of choice

blueberry cream cheese macarons

my fav hobby

creating art

I started writing because i wanted to talk to a friend but didn't have one who could understand. So my journal became my new bestie. When I felt lonely or scared or worried, I wrote all about it in my journal. I talked about the nice nurses in the hospital and mean ones. I talked about the amazing dogs in the hospital who visited us sick kids. I talked about my amazing art therapist and how I strengthened my hand muscles by squishing that clay. I talked about what it was like when I was finally discharged and how it was amazing at first to come home to my own bed and cats, but how hard it was to fit myself back into the life I once had.

I figured out how to create a new life. When I finally published my book three years later, that was kind of the start of my new life. I wanted to share my story and help other kids with rare and chronic diseases.

why did i write my book?

my mission

Get a copy >

All proceeds of my 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.

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