Teenager’s Brave Journey to Seeing the Light in the Dark
By: Miranda Torres
Isabella Veras, 13, was a normal, healthy child who enjoyed music, art, and learning, until one day in 2018 when she began complaining of eye pain. Less than 24 hours later, she lost vision in her right eye. The then seven-year-old was rushed to the emergency room at Bascom Palmer Eye Institute – University of Miami Health System, where, unbeknownst to her, her medical journey was just beginning.
During the visit, Isabella was unable to distinguish anything other than hand movement, and reported having a fever and light sensitivity for a week. Byron Lam, MD, an ophthalmologist at Bascom Palmer, found she had optic neuritis, or optic nerve swelling, in the right eye, along with decreased vision, which he treated with steroids.
“Isabella never had any health complications before this. She was a normal, happy kid, so it was terrifying for us,” said Elizabeth Veras, Isabella’s mom. “We didn’t know what was wrong with her, but we knew she was in the best hands.”
A month later, Isabella experienced loss of appetite, muscle pain, and decreased vision in her right eye again. She was admitted to Holtz Children’s Hospital at Jackson Memorial Medical Center, where she was put on monoclonal antibodies. During this visit, Roberto Lopez, MD, a pediatric neurologist at Holtz Children’s, performed a lumbar puncture to retrieve spinal fluid for testing. The results showed Isabella had neuromyelitis optica, a rare autoimmune disease that causes the immune system to attack the spinal cord and optic nerves.
Bascom Palmer ophthalmologists and Holtz Children’s neurologists and rheumatologists came together to create a plan, including routine MRIs and immunosuppressant treatment with chemotherapy medication from 2019 to 2022.
“We don’t know what will happen in her future, so it was difficult to decide whether or not to start her on treatment,” Dr. Lam said “That’s where having a multidisciplinary team is so beneficial.”
During her time at Holtz Children’s, Isabella was able to find joy in music therapy, and bonded with the Child Life and music therapy team.
“For me, music has always felt like something that is just so right, and it’s the one thing that helps me feel normal in the middle of all the craziness of my life,” she said.
Isabella quickly forged friendships with other pediatric patients on her floor through group music therapy, which saw them all learning to play ukulele together in the hopes of one day starting a band.
“As a mom, this was my first time being in the hospital for a long period of time, and I was worried about Isabella not having a normal childhood,” Elizabeth said. “This is why Child Life and music therapists are so important because they take care of those kids and make sure they’re okay and happy and feel normal, even when they’re in a hospital.”
Over the course of her treatment, Dr. Lopez also treated Isabella’s spinal cord lesions to reduce the abnormal sensations she was experiencing, such as vision loss. With her care team’s support, she remained asymptomatic for five years.
“In a case that involves the brain, optic nerve, and spinal cord, you need involvement of experts and specialists,” Dr. Lopez said. “We are fortunate enough to have the faculty and staff with the experience and knowledge to care for such complex cases.”
Now, Isabella is thriving in middle school, learning, painting, listening to Taylor Swift, and making big plans for her future.
“I hope I can just find a good job with my college degree one day, and live my normal life, even if it means getting treatments, checkups, and MRIs often,” she said. “I hope I get to go on with my life, even if I have to go through some unique things medically. I still want to be able to do all the things everyone else gets to do.”