Victoria Utapi Katuuol

Diagnosis: Acute Disseminated Encephalomyelitis

New Jersey, United States

I vividly remember February 5, 2012, Super Bowl Sunday, because everything changed from that day forward. Our lives changed drastically, and we’ve experienced the kind of pain that no amount of words can truly describe.

It began like a perfectly normal day. I ran off to run some errands and left Victoria home with her dad. Upon returning home, my husband casually mentioned that she was running a fever, and he had administered Tylenol. I immediately noticed how weak she was. I took her to the bathroom to give her a cool bath, as I normally would when she runs a fever. Right away, she started vomiting and burning up. We immediately rushed her to the emergency room. The doctors there ran several tests and said it was “just” a virus, but because she was weak and dehydrated, they decided to keep her overnight to monitor her closely.

After three days in the hospital and little to no change, we were discharged. We were discharged at 4:00 pm and returned that same day at midnight because her symptoms were getting worse. She was only 15 months old and was barely able to articulate properly, but she kept saying, “ouch mommy” when I tried to hold her. Those words keep echoing in my mind and I sometimes wonder if there’s anything I could have done differently.

The doctor who received us at the emergency room (Dr. Judy) saved my baby’s life! She immediately did a spinal tap and initially diagnosed her with meningitis. In a matter of minutes, the situation escalated, and she was rushed to the Intensive Care Unit with at least eight different doctors hovering over her. I was pregnant at the time, and because the virus was contagious, I was not allowed in the room. It killed me… Luckily my husband was with her every step of the way. Within twenty-four hours, my perfectly healthy baby had a g-tube, a trach and machines attached to her. It was the most horrifying scene I’ve ever seen to date. At 15-months-old, she was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).

After one month in the ICU and three months in a children’s rehabilitation hospital, our little brave trooper not only came home walking and talking again, but came home with no tubes attached to her. Within two weeks of coming home, Victoria Utapi Katuuo became a proud big sister to Allyson Avihe Katuuo – a title she holds proudly. To date, Victoria has had over six surgeries, and counting, and is doing amazingly well. She has been fortunate enough to keep up with her peers academically and continues to overcome all obstacles. She has defeated all odds and as her parents, we couldn’t be prouder!

Fun facts about Victoria:

Victoria was born in June, but she’s a spring baby! She loves all shades of blue especially teal. Her all- time favorite singer is Ariana Grande and her favorite song is “7 Rings.” During her free time, she enjoys listening to music, reading, riding her bike and playing with her younger sister Allyson. Her favorite book is Everything for a Dog – she hopes to own one someday, but for now she has an electric dog. Victoria loves all things unicorns and puppies, and she also enjoys the outdoors. Her favorite subject is math and her favorite movie to date is “Middle School the Worst Years of My Life”. She loves pancakes and eggs for breakfast. Victoria is otherwise a happy lucky kind of girl with an infectious love for life!


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