Jason Melena Flores, 8, has masses of cancerous tumors throughout his brain. One tumor sits on his hypothalamus, which affects his pituitary gland, causing an early onset of puberty. Another tumor has damaged his optic nerve, which has made him lose his vision in his left eye.
He was born with a genetic disorder called neurofibromatosis, most commonly referred to as NF.
Scattered throughout his upper body are caramel-colored birthmarks of different sizes and shapes, a common characteristic of NF. On the upper region of his abdomen is a small scar called an “access port” where chemotherapy is administered weekly.
And perhaps one of his most striking physical features is on his face. Right below his nose and above his jawline sits a big, contagious smile.
Jason—or, as his family adoringly calls him, “Binky” (a nickname he acquired due to his attachment to his pacifier as a toddler—is a typical boy who’s fond of sports, games, and Nerf guns. He’s tough and proud of the fact that he doesn’t cry. Bubbly and talkative, his outlook on life is quite positive, and his voice hits an enthusiastic pitch when he talks about the things he enjoys.
He loves playing baseball, football, and basketball. He’s also a member of the Boy Scouts, where he won a second place trophy for “Best in Show” for giving a wooden toy race car a stylish paint job: light blue and topped with a flashy gold stripe through the middle.
Jason also has a talent for numbers: “Once I passed a test that had 30 problems of addition and subtraction in 2 minutes,” he said proudly.
While most kids his age want to be astronauts or cowboys, Jason has a more realistic goal of becoming an accountant when he grows up. He wants to keep track of people’s money for them—and become a billionaire in the process, he said.
Jason has only recently started his chemotherapy treatment, and if there was one low note that came out of him during our conversation, it was his worry about losing his hair.
“I’m not looking forward to it. I’m afraid that kids are going to make fun of me,” he admitted.
His hair has already begun to thin, a stark contrast to pictures of him with a head full of thick locks gelled and combed to the side. Still, he remains handsome and hopeful.
“We watched a video in school about a girl who got leukemia who was taking the same medicine, and she got better and her hair grew back,” he said while looking at his mother, Bobette Melena.
For Melena and her family, traveling back and forth to Los Angeles and Santa Barbara is a weekly routine. In order to help with the costs of gas, hotel stays, and other expenses, they’re having a benefit barbecue on Saturday, March 31, at 507 S. McClelland in Santa Maria by the DMV from 11a.m. to 4p.m.
Jason’s family also hopes to raise awareness of NF in Santa Maria. NF is one of the most common genetic disorders in the United States, affecting nearly one in every 3,000 births.
To learn more about neurofibromatosis, go to nfnetwork.org.
Intern Jason Banania compiled this week’s Community Corner. Send items for consideration to Managing Editor Amy Asman at aasman@santamariasun.com.
This article appears in Mar 15-22, 2012.