The holiday season is a time for giving, and some folks need a little more than others.
Riley Voss, a 5-year-old born to Mount Airy natives, is one who could use a little extra help this holiday season. Last month the boy and his family were told he has brain cancer.
Matthew Voss, Riley’s father, is a sergeant in the U.S. Army, stationed at Fort Bragg. He and wife Ashley now have a home in Sanford, about 30 miles north of the base, but still have local ties. Matthew’s dad, Joe, is retired after a long career teaching at Franklin Elementary School. Matthew’s mom, Lib, was the director of financial services at Surry Community College.
According to Pam Cook, a spokesperson for the Voss family, Riley was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on Nov. 1. It’s a highly aggressive form of pediatric brain cancer with a slim rate of survival.
Riley is undergoing treatment at Duke University as part of a radiation clinical trial, according to mother Ashley. He must report there every weekday, and she doesn’t know how much it’s all going to cost.
“All of the above,” Ashley answered when questioned as to whether donations raised would go toward travel expenses, medical costs, missed work or other miscellaneous costs the family might incur.
Ashley, who works at Central Carolina Community College, said the family’s health insurance isn’t likely to cover some of the care, as it is experimental in nature. Only about 200 to 300 children per year in North America are diagnosed with DIPG, and the main-stream treatments haven’t yielded positive results.
Thus far, the mother said Riley is handling quite well the radiation treatment, which is set to wrap up in mid-January.
“He’s still an energetic 5-year-old,” remarked Voss.
She noted the right side of his face had been paralyzed as a result of the tumor, which cannot be removed due to its location on the brain stem. However, she believes the tumor may be shrinking, as Riley has regained some use of the affected side of his face.
Riley’s next stop in treatment is even farther from home. Ashley said she is hoping her son will soon start a chemotherapy clinical trial at a children’s hospital in Washington D.C. He will have to travel there once a week for about two years.
“We are hoping the clinical trials work,” she said. “They are really the only hope we have.”
Because this form of glioma is so rare, the illness doesn’t get the same attention and allocations as other cancer research, the mother believed.
A recent spending bill in Congress allocated $11 million toward childhood cancer research. Not a dime went toward DIPG. Ashley hopes Riley’s battle will raise awareness of the other 200 to 300 kids who are diagnosed each year.
“We hope it helps get the word out about it (DIPG),” she said. “Even if there’s no cure in Riley’s lifetime, maybe there will be a cure in mine.”
An account has been set up at the State Employees’ Credit Union. Those wishing to make a contribution may make one at any bank branch to the account in Riley’s name. Already, students at Franklin Elementary have spearheaded a campaign that’s brought in more than $3,500 to help with expenses (see “Franklin students raise money to help family,” on this page).
A website, rileyscancersupport.com, also has been created. The site tells Riley’s story, and urges visitors to donate and become one of “Riley’s Rescue Rangers.”
Andy is a staff writer and may be reached at 415-4698.