Serene Zimmerman

November 2016

Tarrah Zimmerman’s 18-month-old daughter, Serene, was diagnosed with neurofibromatosis by a doctor who could not have been less empathetic.

“He was very cold,” the Colleyville mom said. “I was very scared when I left.”

Things changed dramatically when the family arrived at Children’s Medical Center for a second opinon.

“It was a very positive experience. I felt like, ‘This is OK. We’ve got this. This is nothing to be scared or afraid of,’ ” Mrs. Zimmerman recalled. “We walked away feeling positive and thinking, ‘She’s going to be OK. We’re in really good hands.’ ”

Six years later Mrs. Zimmerman still has that confidence largely because her daughter continues to see the same doctor, Dr. Laura Klesse, a pediatric hematologist-oncologist who is director of Children’s neurofibromatosis program.

Mrs. Zimmerman said she noticed about half a dozen spots on her daughter when she was about 18 months old. They looked like coffee stains. Doctors said they were a sign of neurofibromatosis, a condition that greatly increases the likelihood of developing tumors on nerve tissue. The diagnosis was frightening, but Mrs. Zimmerman said she began to feel better when she was scheduled for an appointment with Dr. Klesse.

“I contacted a couple of other parents whose children have neurofibromatosis and asked them, ‘Have you ever heard of this doctor?’ And they said, ‘That’s one of the best doctors in the country. How did you get in?’ ” she said.

Dr. Klesse earned her M.D. and her Ph.D. from UT Southwestern Medical Center’s Medical Scientist Training Program. The neurofibromatosis clinic she runs is one of the three busiest in the nation, according to the Children’s Tumor Foundation. Dr. Klesse and two other doctors see about 450 patients at the clinic, but the huge caseload has done nothing to diminish the personal connection doctors make with each family.

“The first time we met her she gave us her email address ,” Mrs. Zimmerman said. “Any type of question we have she will email us back within the hour. She’s always offered very personal care to our whole family.”

The spots on Serene’s skin have increased to more than 200. But they are faint and painless, and the fourth grader has been able to live a normal life. She enjoys playing outside and reading American Girl books

Annual check ups with Dr. Klesse are necessary because neurofibromatosis makes one much more likely to develop cancerous tumors or leukemia. Mrs. Zimmerman said her daughter is starting to ask questions about the annual doctor appointments, and will probably ask Dr. Klesse many questions in her upcoming visit later this year.

Dr. Klesse’s advice is to be honest.

“Kids are smart. You have to be honest with them,” Dr. Klesse said. “We tell people, ‘You’re at risk for lumps and bumps and other stuff that can come up. You have to watch for it.’ But they’re normal kids. I want the families to know they can treat them as normal kids.”

 

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