Food Safety Victim Testimony: Rylee Gustafson

Rylee Gustafson is a Henderson, Nevada, resident who became ill from E. coli in spinach in 2006.

Rylee's mother, Kathleen Chrismer, had taken her to Monterey, California, for her ninth birthday. While they had planned to visit attractions like the aquarium, they ended up spending a month in the hospital. Rylee awoke the day after arriving with severe stomach pain and diarrhea. Admitted to a pediatric intensive care unit, she experienced dehydration, hallucinations, low blood pressure, and kidney failure. Her infection was later traced to a spinach salad she had eaten on the way to Monterey.

Rylee has irreversible kidney problems and has recently been diagnosed with Type 1 diabetes. Kathleen is now a member of the board for STOP Foodborne Illness, a nonprofit public health organization dedicated to preventing cases of foodborne illness. 

Related: 'We Can't Wait for Stronger Food Safety'

Testimony by Rylee Gustafson

My story begins with a spinach salad I ate at home in August 2006, when I was 9. The spinach was contaminated with E. coli O157:H7. My symptoms began four days later while celebrating my birthday in San Francisco. I experienced diarrhea, stomach cramps and a lack of energy. No one thought it was too serious. In fact, my mom thought I was faking it to get out of doing my homework.

After a few hours, however, I had excruciating pain in my stomach and had continuous bloody stool. Within 12 hours I was admitted to a hospital, where they discovered the infection. I was immediately transferred to UCSF Children's Hospital, which was better-equipped to handle the complications the doctors knew were ahead.

I was lying in the hospital bed, confused and scared. I remember thinking I was going to die and seeing my dad cry for the first time.

There were plenty of immediate health consequences as a result of the E. coli infection. I developed hemolytic uremic syndrome. My kidneys began to fail, which made me require dialysis. My pancreas was damaged, and I needed insulin to control my blood sugar. Fluid built up around my heart and lungs, which required drainage tubes to be inserted into three places in my chest. Swelling around my brain caused temporary psychosis, blindness, and hearing loss.

One week after eating the spinach, I was fighting for my life, and the doctors told my family to prepare for the worst. By the third week of my hospital stay, I thankfully started to regain kidney function.

Being confined to a bed in the intensive care unit for three weeks made me very weak. I had to relearn to walk, speak, and do normal tasks such as dress and feed myself. After 34 days in the hospital, most of them in the ICU, I was finally able to return home to Nevada to recover.

It has been over six years, but the mental and physical scars linger. I frequently think about the safety of the food I eat and am constantly reminded about the dialysis catheter and drainage tubes in my chest. The severity of my illness will likely cause me to need kidney transplants before I'm 30. Last year the diabetes returned — a long-term consequence of the damage to my pancreas. Now, before every meal or snack, I have to give myself a shot of insulin — one more reminder of my illness.

Unfortunately, my experience is not unique. When people ask me why I am passionate about food safety, the answer is simple: I don't want anyone to have to go through what I did — or worse, die because of something they ate. I have been able to take my experience and make a positive impact by sharing my story. But my job as a food safety advocate is far from over. Being here today — to support the FDA in the release of the proposed produce safety rule and to encourage the agency to finalize it quickly with the hope that fewer people, young and old, are forced to suffer because of foodborne illness — is just the next chapter in my story.