On Dec. 18, Sara Pavesi, 10, a guest performer for the Atlantic City Ballet, twirled across the stage of the Paul W. Schmidtchen Theatre at Lower Regional High School in Lower Township in “The Nutcracker.”
Her mother, Theresa, sat in the audience.
“She inspires me,” Theresa Pavesi said. “To see the look in her eyes when she’s dancing, to see how much she is enjoying it, enjoying life, is an incredible thing.”
Sara Pavesi, of Hammonton, has Type 1 neurofibromatosis. Neurofibromatosis, or NF, is a genetic disorder that causes tumors to form on nerves — anywhere in the body at any time.
Sara said her dancing is dedicated to raising awareness about the disorder.
“One of my favorite songs to dance to is the string quartet version of Journey’s ‘Don’t Stop Believing,’ because it’s really pretty and because it means something to me,” Sara said. “I won’t stop believing one day there will be a cure for NF.”
In the “Hammonton’s Got Talent” show, Sara danced to that song, dedicating it to people with NF. “That was always a dream of mine,” she said. She won third place.
NF-1 is the most common form of NF, Theresa Pavesi said. It is the form Sara’s father, Russell, was found to have a few years after Sara was born. Sara and Russell both received diagnoses in 2005.
“The thing is, many people just don’t know they have it,” Theresa said. “If my husband spent most of his life living with it without knowing, how many others do you think are walking around with NF? It’s about awareness.”
Doctors had no explanation for the dark discolorations on her daughter’s skin — which her father also had — but Theresa said she knew something was going on. She applied to nursing school to seek out more knowledge.
“Before (Sara) could crawl, I noticed patches of darker skin coloration. Eventually her hands ended up two different colors” — an indication of NF, Theresa Pavesi said. “We were studying a chapter on skin, and there in my textbook was a picture of a marking just like Sara’s. The caption said, ‘cafe au lait macule.’ So I looked this up in my medical dictionary and was referred to neurofibromatosis.”
Despite the diagnoses, Russell Pavesi said, Sara keeps her head up and her feet en pointe.
“She is just a bundle of positive energy,” he said. “She has never let it get her down.”
Theresa Pavesi said that when Sara first received a diagnosis in 2005, at age 5, she and Russell promised Sara that they would not keep any secrets from her. “On one condition: She doesn’t worry,” Theresa Pavesi said.
After Sara learned she had NF, she really wanted to find other people with NF too, she said.
She became involved with NF Inc., a national organization that advocates for federal funding for NF research. She began e-mailing a pen pal who also has NF, and she began to dance ballet.
Sara also is learning American Sign Language to communicate with deaf people. People with Type 2 NF often become profoundly deaf when tumors grow on the auditory nerve.
“I want to help people,” Sara said.
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