Living with Neurofibromatosis


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Sally Nagappan, 3, was diagnosed at birth with a rare genetic disorder called neurofibromatosis or NF. Neurofibromatosis is a disease that causes nerve cells to grow uncontrolled, creating tumors in the nervous system. It can be very mild in some kids, but others can have problems such as brain tumors, tumors around the eye, seizures or bone problems and some tumors may become cancerous.

At birth, Sally had a benign tumor around her eye that extended back to the blood vessels near her brain. During her first year, she needed frequent tests and eye surgeries, physical therapy and required a feeding tube because she was not able to eat enough on her own. Between ages 1 and 3, she slowly progressed with her eating and now isn't using her feeding tube at all.

"One of the difficult things about NF is that the prognosis is variable," says Sarah Jordan, Sally's mom, who lives in Greensboro with her husband, Sally and 6-month-old son. "Kids with NF can have brain tumors, severe scoliosis or other issues as they get older. But many kids don't have any of these problems, and our hope for Sally is that there are no further problems."

Jordan says she and her husband, Suresh Nagappan, both have so much respect for Sally's poise and ability to cope with her challenges at such a young age. They describe their daughter as having a great sense of humor and a strong independent streak. She loves to take care of her dolls and build with blocks, and her favorite outing is to the Greensboro Children's Museum.

"One challenge has been that other kids don't always know how to respond when they see Sally's eye," Jordan said. "Sally has gotten good at realizing that kids are naturally curious, and we try to remind other children that Sally is a regular kid who happens to have a tumor around her eye. And that it's OK to ask her about it."

Since NF is relatively rare, there were not a lot of resources or an established support group in the Triad when Sally was first diagnosed. The Jordan/ Nagappan family has teamed up with several other local families who have a child with NF and formed a local support group that holds an annual fundraising walk every April. More information can be found at www.FightNF.org.

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