Diagnosis: Optic Glioma
Evelyn was diagnosed with brain cancer at 3 months old. Her dad, Braulio, noticed her left eye was protruding and moved around on its own and Evelyn would cry at night. They brought her to a pediatrician who referred her to Rady Children’s for an MRI. At 6 months old, the MRI showed that she had a brain tumor. “That day will forever live in my memory. It was shock, sadness. I was 24 and I grew into a man that day. I had to stay strong for everyone.” Her dad recalls.
Dr. Levy explained to the family that if they removed the tumor, she could potentially be a vegetable and blind. So the family decided, along with the physician’s counsel, to treat it with chemotherapy. “We were going to the hospital every week, sometimes 2-3 times per week” Braulio recalls. “It takes a toll on your mind and body. I tried to inform myself and ask as many questions as possible. The staff was great with my questions and welcomed them. I built relationships, friendships with the staff. Since we have been coming to Rady Children’s for 10 years, I’ve seen the staff move into higher positions, but we still stay in touch.”
Braulio recalls a teen named Marlin who was battling cancer, and who the kids all looked up to. He was an ambassador for the kids, an inspiration.” “Evelyn is becoming an ambassador herself.” He says. He remembers a time when a girl was crying because her hair was falling out. Evelyn asked her what was wrong. The girl said “my hair is gone.” Evelyn replied “ Look at my hair. I lost it and it grew back. Yours will too.” They hugged and the girl stopped crying. “She’s giving back now” Braulio proudly says.
“Evelyn is always upbeat, happy. She is always smiling. You know if she’s not talking or smiling, she’s really not feeling well. She is a warrior.” Braulio beams.
Today, Evelyn stays positive. She wants to be as normal of a 10 year old, 5th grader as possible. She is unable to use her left hand, has facial paralysis, lost her vision in her left eye and has limited vision in her right. Her wrist strength is weak so she has difficulty using her hands. But that does not stop her or get her down. “In her 10 years of life, she has done so much” Braulio says. “Today was a good day. No headaches.”
Evelyn also loves to sing. Her favorite song is “I love you like a love song” by Selena Gomez. “We’re very lucky to have her in our lives. She has changed our lives.” Braulio says.
He only began sharing his story recently and was touched by the outpouring of support from people who didn’t know. He has always been private and stayed strong. As Evelyn says “We need help finding a medicine for a cure for me.”