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Neurofibromatosis is a genetic disorder causing tumors to form on nerve tissue, including the brain, spinal cord and nerves. It is usually diagnosed in childhood or early adulthood.
Neurofibromatosis 1 (NF1) usually appears in childhood. Signs are often evident at birth or shortly afterward, and almost always by age 10. They include flat, light brown spots on the skin, freckling in the armpits or groin area and bone deformities.
Learning disabilities and impaired thinking skills are common in children with NF1, but are usually mild. Often, there is a specific learning disability, such as problem with reading or mathematics. Attention-deficit/hyperactivity disorder (ADHD) is also common.
Neurofibromatosis 2 (NF2) is much less common than NF1. Signs and symptoms generally appear in the late teen and early adult years and can vary in severity. They usually result from the development of benign, slow-growing tumors in both ears. These tumors grow on the nerve that carries sound and balance information from the inner ear to the brain.
Symptoms include gradual hearing loss, poor balance, pain and vision problems or the development of cataracts.
Source: The Mayo Clinic
Just four hours before an operation Thursday at Children's Hospital Colorado to remove a tumor on the right side of her rib cage, 15-year-old Presli Collins was already thinking about her recovery.
"I'm excited," said Collins, an eighth-grader at Cimarron Middle School in Parker, who already has three major surgeries under her belt. "I'm just glad to get the pain over with once it's healed. I just want to be able to do everyday tasks without being in pain."
Collins has a rare disorder known as neurofibromatosis type 1, which causes tumors to grow on her nerves. Commonly referred to as NF1, the genetic disorder causes pain throughout her body and an intense, stabbing sensation when she breathes. The pain causes a lot of missed school days, and everyday activities like going to the store leave her exhausted.
Previous surgeries treated issues with her spine and brain, but if Thursday's operation goes well, Collins' pain could be kept at bay, at least for a time. The surgery was expected to begin at 3 p.m.
"It's a marathon with hurdles," Collins' father Andy said. "We'll deal with this hurdle and kind of forget about the disease, hopefully, until the next hurdle shows up."
As she leaps over this hurdle, Collins will have a cheering section that spreads across the country.
Blue is Collins' favorite color, and well-wishers throughout the area, including students and staff at Cimarron and Legend High School, members of the police department, and even a flight team at Buckley Air Force Base, wore blue to show their solidarity with Collins on the day of her surgery.
Cimarron Assistant Principal Doug Kapeller said Collins' name comes up a lot when school staff checks in with one another, and the comments always reflect their admiration of her upbeat attitude and grace.
"Adolescence is a tough time in a person's life to begin with, and to have all this added to it is a challenge," Kapeller said. "Her positivity is like a breath of fresh air."
Andy started the hashtag #blue4presli to raise awareness of NF1 and a similar condition, NF2, as well as a Facebook page, pray4presli. Posts have been shared from California to Florida to New York, and organizations including the Tim Tebow Foundation and the Children's Tumor Foundation spread the word as well.
Knowing so many people are rallying behind her is encouraging - and humbling - for Collins. She hopes the recognition will last beyond May 11 to serve a bigger purpose.
"I just hope they find a cure for the pain of NF1 and NF2," she said. "All kids experience a different kind of pain - I just hope they find a cure for both."
Dealing with NF1 isn't easy, Collins said, but surrounding herself with positive people and staying optimistic have worked for her. And that's what she recommends for other children with NF1 and NF2.
"It's hard, but you'll get through it and it's worth it in the end," she said. "I'm going to have bad days, but I'm going to have good days."
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