Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
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Monroe Carell Jr.
Children's Hospital
at Vanderbilt
2200 Children's Way
Nashville, TN 37232


(615) 936-1000

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Meet Anna
 

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Anna Raney has a visible, toothy smile, which she wears proudly as she articulates that her favorite pastimes are riding a four-wheeler, swimming and playing Super Mario Brothers on Nintendo DSi.

Her favorite school subject: math.

"Because the answer is always the same," said Anna, a fifth-grader at East Robertson Elementary School in Cross Plains, Tenn.

She's on student council, in a 4-H program for young leaders and she consistently makes the honor roll. She's also the oldest of four girls.

But it's what you can't see that makes her that much more amazing. She has three brain tumors, and you would never know it.

Anna, 11, has Neurofibromatosis, and more specifically in her case, NF1, one of three distinct genetic disorders that causes tumors to grow on nerves throughout the body. It is a lifelong disorder, which varies in severity and complications. NF doesn't discriminate, affecting both sexes and all races and ethnic groups.

Despite NF being more prevalent than Huntington's disease, Duchenne muscular dystrophy and cystic fibrosis combined, the disorder gets little attention. More than 100,000 Americans have Neurofibromatosis.

"I had never heard of it until she was diagnosed," said Anna's mother, Andrea Parks. "There are so many things they don't know about NF. That's what's so frustrating. There aren't enough answers, and not every case is the same."

Anna has been treated at the Monroe Carell Jr. Children's Hospital at Vanderbilt since 2000, when doctors at the Tennessee Lions Eye Institute diagnosed her.

Anna was 9 months old. She had a glioma (tumor) on the optic nerve of her right eye as well as three brain tumors. 

Initially, Andrea thought maybe a bump alongside Anna's eye was a mosquito bite, but it lasted three weeks. Anna also had multiple birthmarks, a trait of NF1 known as café-au-lait spots. She has had two surgeries on her eye since diagnosis. Eventually, she will have cosmetic surgery to correct the shape of the area around the eye lid.

In kindergarten, Anna began chemotherapy to tackle the optic glioma, receiving treatment once-a-week for about 18 months.

"We're comfortable here. It has become a part of our everyday life. The staff up in the cancer clinic is great," said Andrea.

Anna had nearly a four-year break from treatment because the tumors were under control - until two months ago.

One of the tumors had shown rapid growth, expanding in size in the six-month time frame since her last scan. Now, she is undergoing chemotherapy, again, once-a-week for a year.

Anna and her mother don't know her prognosis.

"I've been an emotional wreck the past two months," Andrea said. "She's been a lot stronger and brave."

Ask Anna if she ever gets scared, and she responds assuredly, "No."

Anna's only complaint: that she has to miss school on chemotherapy treatment days.

"I like seeing my friends," she said.

To help raise awareness about the disorder, Anna and Andrea will participate in the 2nd Annual 2011 Music City NF Walk!

The mother and daughter duo also hope to bring enough attention to the issue to perhaps have an NF clinic at Vanderbilt.


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