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Emily's story

Neurofibromatosis: Emily's story

EmilyWhat started with a bad headache turned into an odyssey of 12 surgeries over the next two and a half years for Emily.

Emily had been diagnosed with neurofibromatosis (NF) when she was a little girl, so she and her family were well aware that the condition can cause tumors to develop anywhere on the body. But the effects of NF can vary wildly - from the very mild to the severe - and in Emily's case, there hadn't been much to worry about other than an annual visit to genetic and dermatology specialists at Children’s Hospital of Wisconsin.

That all changed in 2013 when she was 14 and got "a really bad headache," which then led to the entire right side of her body tingling. Her parents took Emily to their local ER near Williams Bay, Wis., where it was discovered she had bleeding in her brain. She then was transferred to Children’s and found out it was a tumor.

It was located near her brainstem, and there was concern that surgeons wouldn’t be able to remove it. But eventually Emily did undergo a series of surgeries, the longest of which lasted more than seven hours, performed by Andrew Foy, MD.

It was an arduous process, and there were definitely moments of uncertainty along the way, but Emily’s quality of life had deteriorated to the point that there were few other options.

"Before my really big surgery, I just started going downhill fast," she said. "I was getting weaker, and everything looked blurry because [the tumor] was pushing on my optic nerve, so I had to turn my head to look at anything. It also made my glasses prescription change a lot. Things were just not good."

Things stayed not good immediately after the surgery as Emily couldn’t move the right side of her body. But this was an expected development, one Emily and her parents said they were well prepared for, thanks to the counseling of the Children's staff.

"They made it very clear what to expect and what was going to happen," said Mike, Emily’s father. "We bombarded them with lists of questions, and they would sit down and answer them. They never rushed us, and even better than that, I would have to say that when we asked a question, they would answer it to Emily. Even when Emily would ask questions by feeding them through us, the people at Children’s would always look at Emily when they answered."

"And they put it in words I could understand," Emily added.

Emily spent 27 days in the hospital recovering and rehabilitating, and on the day she left the staff had a ceremony for her and gave her a medal for all the hard work she had put in.

Now 17, Emily has just finished her junior year of high school and is back to her active self, having competed in cross-country team, basketball and softball. She also just got her driver’s license.

When she does come back to Children's for follow-up appointments, it's always to a happy reunion with the nurses, doctors and other pediatric specialists who have come to know her well - some, like genetic counselor Heather Radtke, MS, CGC, who have known Emily since she was a toddler.

"I go up to visit them and they all say how good I look and how they're just really impressed to see how far I've come," she said. "It feels good."


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