NF HERO: JULIA PERFETTI

"Our daughter Julia was diagnosed with NF1 when she was 4 years old. She was born with a very small cafe- au lait spot on her left upper arm. As she grew older more and more kept appearing and freckling began on her stomach and arm pits. When she was 4 we were at the pediatrician for another reason and he counted all her "polka dots" as she named them and told us to take her to a specialist. Since that first appointment we began to learn more and more about this terrible disorder.

Julia has a very mild case so far. She has had MRIs of her brain and spine to check for tumors. She has multiple UBOs on her brain, like so many people who have NF. She had a suspicious area at the base of her spine but it didn't change in her last MRI so that should be fine. We are thankful that so far Julia has stayed healthy. We pray everyday that it stays this way. Julia is quite a trouper! She doesn't complain when she can't eat for up to 15 hours because we're waiting for an MRI. She doesn't complain when she misses school activities, play dates or parties because she has a doctors appointment or when she needs blood work. Our Julia is a strong girl. She loves playing soccer, swimming, helping us with her younger brother and sister, shopping, playing house and having her friends over."

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