Second First Steps: Brea's Story of Recovery

Patients

Brea

I was looking for my ballet shoes. They were always in my reach, but that day, they rested on a high shelf. As I stretched out to grab them, I noticed something was wrong with my feet. I couldn’t get on my tippy-toes. I ran to my mom in a frustrated panic, knowing she had a quick fix for my problem. I was dramatic at age seven and exaggerated the truth, so she initially dismissed me. But this time I wasn’t kidding — not only could I not get on my toes, I couldn’t feel them.

I went in early for my yearly physical after things didn’t improve in the next week. To everyone’s surprise, my doctor couldn’t find any reflexes. The room filled with fear. The doctor said something was wrong with my feet, and my mom started crying. I was immediately referred to Children’s Hospital Colorado.

I stayed calm while preparing to see a specialist at the hospital — telling myself that if the doctor had bad news, that was when I could panic. My doctor, Julie Parsons, MD, the Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders and co-director of the Neuromuscular Clinic, ultimately diagnosed me with chronic Guillain-Barre. My immune system had attacked my nervous system, and it had stopped working properly. I started to lose the ability to use the bottom half of my body.

It affected everything: sleeping, stretching and walking weren’t as natural anymore. I had to make myself comfortable with much more effort than I can ever remember.

Losing feeling from the waist down was a scary ordeal, but piggyback rides from my mom made it a little better. We lived in an apartment building on the third floor, and she carried me on her back every day after school. I could barely walk without assistance, but I couldn’t climb the stairs. She always made it seem like a fun game we decided to play, not bringing attention to my inability to do something I could easily do just a month before I had turned eight years old.

I never hated school until I found out how people reacted around the “sick girl.” It was terrible. Everyone either avoided me or pitied me. I had to be brave and stand up for myself. At times, it was tough to ignore bullies and the songs they made up about my leg braces.

Things I used to be able to do were no longer a possibility. Ballet and hopscotch were replaced with IV’s and hospital beds. Not to mention all my treatments — nothing was more painful than a spinal tap. A needle pricking me continuously, ranging from a slow prick to an aggressive scrape. It allowed the doctors to track the progression of my fast-spreading illness.

I hadn’t truly feared my life-altering illness until I couldn’t snap anymore; it was spreading to my hands and torso. The only cure was a plasma apheresis — a white blood cell transfusion. All I remember is waking up with circle wounds the size of silver dollars under my arms, where tubes had been inserted to exchange defective blood cells with new ones.  

It wasn’t all bad — my recovery lasted over six months in the hospital, which mostly consisted of weekly pedicures at my request. My nurses helped me paint my toes, since I couldn’t move my body to reach them.  I always got great compliments from Dr. Parsons about my expert nail polish selection. 

After a month of treatment, I gradually began to have feeling below my waist again. Everything started to wake up, as if my body had taken a long rest. I was still wobbly, but I took my first steps again at age 10.

From there, I worked hard in long physical therapy sessions. Once I was stronger, I discovered tennis as my new favorite activity. I was captain of my tennis team at Gateway High School for three years and won MVP my sophomore year.

It’s amazing how the thought-process changes with age. I remember being so straight-forward with my thinking at seven years old. I must walk again, because I want to dance at prom. I must walk again, because I want to play sports. I wasn’t afraid as much as inconvenienced in searching for a way to better myself.

Fifteen years later, I returned as a Marketing Communications intern for Children’s Hospital Colorado Foundation. I owe everything to this hospital. The expertise and care from my physicians and nurses helped me walk again. I’ve had the ability to attend three of the Foundation’s signature events, providing photography assistance, coordination, and most fulfilling of all after the journey I’ve been through, walking from one task to the next.

I also owe everything to my mom. Without the doctors, I would physically be in a wheelchair. Without her, I would mentally be in a wheelchair. She never let me give up and let a disadvantage stop me from reaching my full potential. Today, I’ve fully recovered.

I’ve learned to appreciate the health journey of my past as a propellant to a stronger future, one step at a time.

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