NEW YORK, March 13, 2012 /PRNewswire-USNewswire/ -- Imagine being told by a doctor, "Your child has a genetic disorder that will affect the rest of her life. There are few medical treatment options and there is no cure."
Sylvia Colon experienced just such a circumstance when her daughter, Chloe, was diagnosed with neurofibromatosis type 2 (NF2) at age 13.
Neurofibromatosis (NF) causes tumors to grow along nerves throughout a person's body and occurs in 1 in every 3,000 births. It is the most common rare disorder you've never heard of; a life-long burden with a variety of potential complications and variations in severity. The tumors associated with NF can cause blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.
Since her diagnosis, Chloe has endured numerous surgical procedures and countless medical interventions. Due to complications from a 2009 surgery, to remove a tumor from her brain, Chloe is now in a wheelchair and has both a trachea tube and a feeding tube. NF2 has also taken Chloe's hearing, but according to her mother, "her spirit, her sense of humor, her genuine kindness, and her stubbornness remain intact."
Sylvia raises money for NF research by running with the Children's Tumor Foundation's NF Endurance team. On March 18, 2012, she will travel from Florida to NYC to run the New York City Half Marathon.
Along with Sylvia, 38 other NF Endurance members will run the 13.1 mile course. This is the third year that NF Endurance has participated in the New York City Half Marathon, and this year's team has raised over $43,000.
Sylvia is excited to run the NYC Half Marathon not only because it will bring Chloe to her favorite city, but because she knows the money she raises can make a substantial difference in someone's life. "I run for Chloe," Sylvia says, "but also for the many other people like her, who live with pain and without hearing, and with deformity and who have acquired more doctors (and even more tumors) than any person should have."
The Children's Tumor Foundation's NF Endurance team has over 25 races nationwide, from marathons to half marathons to 5k's. Most races do not have a fundraising minimum and post close entries are available for many of the popular sold out races. To see a list of NF Endurance team races and to sign up, please visit www.ctf.org/nfendurance.
About Children's Tumor Foundation The Children's Tumor Foundation is a 501(C)(3), not-for-profit organization and recipient of a four-star rating from Charity Navigator. The Foundation is dedicated to improving the health and well-being of the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2 and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF is under-recognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease combined. The Children's Tumor Foundation funds critical research to find treatments for NF. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community. For more information, please visit www.ctf.org.