Tarrah's Story

"I remember the first day my mother walked me into the dance studio at 3 years old." Tarrah Bossert a 20 year old Park University sophomore from Parkville, Mo said. She was later convinced that she wanted to dance by herself. As she rode in the car with her mother she proclaimed,"I want to dance myself!" A curious mother asked, “Why?" She finished, "Because they don't know what they are doing." At the age of 5 years old, she began to compete at regional and national competitions.

"At the age of 5, I cared so much about dance. I did other things such as soccer, basketball, swimming, softball. But with dance I wanted to be perfect."

One evening in 2001 while leaving the dance studio, Tarrah told her mother about a constant pain in her right quad. After seeing her family doctor she was told it was a pulled hamstring. Surprising the pain didn't stop there. It began in her left leg, then the back, even her neck, and soon it was her whole body. Tarrah explained, "I broke my ankle before, but this pain was worst." Soon she was bed stricken, unable to move without excruciating pain.

Tarrah kept dancing, but doctors believed dancing caused her pain. She took 6 months off, to see if the pain would stop.

At the age of 12 she felt confused, as her teachers told her to keep dancing. "I remember my teachers use to tell me, just because your leg hurts doesn’t mean you can’t do your arm movements. I thought to myself, I am! Until one day my mother filmed me in practice, when I watched the video, I couldn’t believe what I saw. I was devastated, I thought I was doing everything, but it looked like I wasn't even trying." Tarrah explained.

At this point Tarrah's mother took her to a pediatrician,  knowing there was something wrong other than a pull hamstring. The pediatrician sent her for blood work, and to see an orthopedic,http://orthopedics.about.com/  who believed the back pain was from crutches.  The blood test results tested positive for ANA.
The pediatrician believed this was a type of rheumatic disease.( http://www.webmd.com/rheumatoid-arthritis/an-overview-of-rheumatic-diseases) He sent Tarrah to Children's Mercy

Rheumatology

November 2002 the Rheumatology Department diagnosed this as dermatomyositis disease. ( http://www.dermnetnz.org/immune/dermatomyositis.html )To jump start the treatment two things were to be done, one being a weekly infusion of steroids which would take approximately five hours. The other orally, take two steroid pills Prednisone, and Methotrexate. This made her hair fall out, and weight gain. She explained, “I was freaked out when my hair would come out as I brushed it, but I took the medicine because I just wanted to be better."

In 2003 the constant pain continued in her whole body again leaving her bed ridden. This pain was described by the doctors as a flare-up. Her mother called her doctor and explained the pain she was going through. The doctor responded, “That makes no sense to me, that’s just weakness.” This left Tarrah with many of emotions.

Tarrah’s seventh grade year of school during spring break, herself and mother went to New York to the Hospital of Special Surgeries. To see Dr. Lehman who wrote the book “It’s not just Growing Pains.” Dr. Lehman did more tests, and had no answers for Tarrah. He stuck with the original diagnoses. Dermatomyositis.

In the past year the doctors have diagnosed Tarrah with Pompe http://www.pompe.com/en/patients/about.aspx .She is still searching for answers, and to understand this disease in more detail. There currently is a movie called Extraordinary Measures a staring Brendan Fraser and Harrison Ford, about a dad and a daughters diease, that best realates to what Tarrah is going through.

At this point more emotions, and un-answered question where on the mind of the Bossert Family. “I can remember the day I was diagnosed, I had one question to the doctor, am I going to die?” The doctor look at Tarrah in her eyes and said, “ No, we're going to put you on treatment. A third of people become crippled, a third are fine, and a third die.”

In 2008 Tarrah flat lined during a flare up. http://www.ehealthmd.com/library/crohnsdisease/CD_dealing.html

Due to this disease, Tarrah has lost overcome many obstacles, losing friends, missing school, and flexibility restraints. Through this Tarrah believes complaining is not the cure of her disease. “I dance.” She says.  “I don’t let this hold me back, I love to dance. We all have challenges we face, but it doesn’t have to set you back.”

           Extradonary Measures Trailer

Next: A follow up interview will be conducted along with doctor interviews. Tarrah has seen more than 32 doctors since she had her first flare-up. Still she and her family believe she is diagnosed wrong.