Despite Autoimmune Walk No-Shows, Teen Continues Fight for Funds and Awareness of the Disease

Like other teens her age, 15-year-old Tory Borovay enjoys hanging out with friends and riding her razor scooter, especially to her favorite destination, Subway.

What makes this so remarkable isn’t the fact that she wasn’t able to eat food for the first eight years of her life or participate in sports as a young child or even that she now dedicates her spare time to helping others. What amazes her family is that for the last seven years, she has shown no signs of the autoimmune diseases that ravaged her childhood and her family so profoundly.

Tory spent the first nine months of her life at Children’s Hospital Los Angeles with feeding tubes as her sole nourishment experiencing an affliction so rare, that at first, it perplexed all of her doctors. Ultimately, her parents, Gary and Debby Borovay, received a diagnosis of autoimmune enteropathy, a condition that affects the small intestine.

“It’s so rare that she’s the only one in the world who has it,” said Debby. “It could be called Tory’s disease.”

But the initial diagnosis was just the beginning of years of struggling. Her entire first year was spent laying in a hospital bed hooked up to a venal catheter tube known as a central line. Heavy doses of a variety of medications, including immunosuppressants, steroids and even transplant drugs rendered her susceptible to illnesses, and her central lines were constantly becoming infected due to a genetic blood disorder that caused clots to form causing blockages.

At the age of 7, Tory was also diagnosed with autoimmune disease of the lung and liver which kept her home from school and bed-ridden for all of second grade; consequently, she is in eighth grade instead of high school.

“The cells that make up the lining of certain organs were attacking each other," said Gary, adding that her heart and pancreas were also affected. 

Dr. Gerald Berkman, an Agoura Hills pediatrician has been treating
Tory Borovay since 2004. "She has a very rare condition where she makes antibodies against her liver, bowl and lungs," said Berkman. "The combo of all three ... if there are more like her, I've never heard of it."

Although Tory’s particular experience is exceedingly unique, there more than 100 kinds of autoimmune diseases exist, including type I diabetes, rheumatoid arthritis, lupus, multiple sclerosis and Crohn’s Disease, and doctors have yet to find a common thread linking them all.

Even more perplexing is the fickle nature of many of these diseases, since no one is quite sure why they come and go and if they’ll be back.

"It was amazing to see how sick she could get and still get better," said Gary.

For these reasons, Tory organized a walk last Sunday, June 3, to benefit the American Autoimmune Related Diseases Association but no one showed up, in spite of having been publicized in the local media as well as in the newsletter at Temple Adat Elohim where the Borovay family have been members for the past four years.

Only family members and close friends were represented, causing Debby to question why cancer walks draw so much attention while autoimmune afflictions remain relatively obscure in spite of their prevalence.

“More people have autoimmune disease than have cancer,” she said. “One in five Americans have some form of it, that’s 50,000,000 people.”

Though the walk didn’t coalesce into the community-wide event the family hoped for, they were successful in raising money on Tory’s website, surpassing her original goal of $1000 by hundreds of dollars.

“I had people I haven’t heard from in 30 years donate money,” said Gary Borovay

Having just celebrated her 15th birthday on May 20 with a pool party, the student is looking forward to attending Hebrew High School in the fall and hates to talk about her baby years or about being sick.

Though small in stature due to being prescribed steroids at a young age, she is energetic and headstrong, imbued with an innate perserverance that her father believes assisted her in defying the odds to overcome incredible difficulties experienced during the most critical stages of her development.

Instead of focusing on what some would euphemistically refer to as a rough start in life, Tory prefers to look ahead, volunteering to take care of animals at Petco and tutoring at the temple that has been such a big part of her life.

She’s not shy, however, to admit the significance of getting involved with a cause that has so greatly impacted her and the lives around her. “It’s very important,” she said. “It means a lot to me.”

The family plans on making another attempt to galvanize the community in the near future. In the meantime, donations can still be made online.