By Ted Waddell
GRAHAMSVILLE — March 7, 2003 – Brianna Worden is a sick little girl.
But you’d never know it to see her performing spirited routines as the mascot of the Tri-Valley Central School varsity cheerleading squad.
At the age of four months, Worden, who is now six-years-old, was diagnosed with a rare disease called neurofibromatosis (NF) Type 1, an illness with no known cure.
The local cheerleading squad will host the Second Annual Tri-Valley Cheer-A-Thon tomorrow from 11 a.m. to 5 p.m. to raise money for the National Neurofibromatosis Foundation (NNFF) and sponsored cheerleading teams.
The neurofibromatoses are a set of genetic disorders which cause tumors to grow along various types of nerves and in addition, can affect development of non-nervous tissues such as bones and skin.
Neurofibromatosis has been classified into two types: NF1 and NF2.
NF1, also known as Von Recklinghausen NF or Peripheral NF, occurs in one of 4,000 births, and is characterized by multiple cafe-au-lait (coffee-colored) spots and neurofibromas on or under the skin.
Enlargement and deformation of bones and curvature on the spine (scoliosis) is also possible.
NF2 is also called Bilateral Acoustic NF (BAN). It is much rarer, occurring once in 40,000 births. NF2 is characterized by multiple tumors of the cranial and spinal nerves, and by other lesions of the brain and spinal cord.
Little Brianna, the daughter of T-V varsity cheerleading coach Janna Worden and Rob Worden, who is an assistant principal at Liberty Middle School, was born with NF1.
Since 1999, she has been an active member of the cheerleading team.
“Our cheer teams have watched Brianna grow, and understand what she grows through as a child afflicted with this disorder,” said Janna Worden.
Two years ago, Janna Worden competed in the annual Monticello Raceway Beauty Pageant as a way of raising public awareness about neurofibromatosis. She wowed the judges and was crowned Miss Monticello Raceway 2001.
In addition, she is pursuing an acting career and is involved with Project Green Light, an organization of screenwriters.
For the last three years, Janna and Brianna have traveled regularly to Boston, Mass., where the little cheerleader visits medical professionals at Children’s Hospital and the Dana Farber Cancer Institute for preventative checkups.
“Brianna is a very strong-willed child, and very empathetic towards other children and adults,” Janna Worden said. “She is very concerned about the well-being of other people.”
Brianna’s condition is a spontaneous mutation. The Wordens’ four- year-old twin boys, Brandon and Robert, are both healthy lads with no signs of neurofibromatosis.
“Sometimes she asks questions like ‘Why did this happen to me?’ or ‘Mommy, why does my arm hurt so much?’,” Janna Worden said. “But she’s a very mature six-year-old.”
She said that all the young women on the varsity cheerleading squad look after the littlest cheerleader like big sisters.
Cheryl Shelton, a 17-year-old senior at T-V has been cheering for 10 seasons, and has created a special place in her heart for Brianna.
“She is the sweetest little girl in the world,” Shelton said. “She comes in with a smile on her face every day, and no matter what happens, never lets anything get her down.”
Half of the money raised at tomorrow’s event will be sent to the NNFF, a non-profit medical foundation dedicated to improving the health and well-being of individuals and families affected by NF.
The foundation sponsors scientific research aimed at finding the cause and cure for both types of NF, promotes the development of clinical activities, develops programs that increase public awareness of the disease and provides support for patients and familes with accurate, comprehensive information about neurofibromatosis.
The remaining 50 percent of the money raised by each team goes home with the cheerleading squads.
Midway through the cheer-a-thon, the T-V Bears’ boys varsity hoopsters will take to the court for a three-point shootout.
Toward the end of the cheer-a-thon, the T-V varsity cheerleading squad and the boys varsity basketball team will switch coaches, as Janna Worden and Jason Semo put their opposite numbers through some routines.
“We’re always joking about who works harder, the cheerleaders or the players,” Worden commented. “Now we’ll see.”
Awards will be given to both the junior varsity and varsity teams that raise the most funds.
In addition, “spirit” awards will recognize the squads who are judged the most spirited.
Brianna Worden has taught the varsity cheerleading team at T-V some valuabe lessons.
“We want people to learn that things can be worse, and not to take things for granted,” Janna Worden said. “The girls have learned to put their own lives into perspective . . . maybe breaking up with a high school boyfriend isn’t all that serious.”
For more information about the Second Annual Tri-Valley Cheer-A-Thon or a NF support group, call Janna Worden at 985-0163 or e-mail her at Janna_25@yahoo.com