Valley Mom and Children Diagnosed with Rare Brain Tumors
A Gilbert woman and her teenage children are all undergoing treatment at Barrow Neurological Institute for potentially deadly brain tumors caused by a rare and genetic disease.
Leslie Nava, 42; her son Damien, 18; and daughter Ali, 17; suffer from neurofibromatosis type 2. The disease causes benign tumors, called acoustic neuromas. Acoustic neuromas affect 1 in 33,000 individuals worldwide. The brain tumors can cause hearing loss, paralysis, and death, if left untreated.
Leslie is one of seven in her family to have inherited the condition. Her brother died from the disease as a young boy, and her mother lost her hearing and mobility as a result of the tumors.
“I have watched so much suffering occur in my family because of this horrible condition,” says Leslie. Once I had my children, I made sure they were closely monitored to prevent the illness from taking their lives, like it did with my brother.”
Leslie, who was diagnosed at age 17, had two brain tumors removed when she was 18. Five years later, while pregnant with Damien, one of the tumors grew back and she started to lose hearing in her left ear. She underwent CyberKnife radiation therapy treatment at Barrow to shrink the tumor, and it has not grown since. Barrow is part of Dignity Health St. Joseph’s Hospital and Medical Center.
Damien was diagnosed at 14 when doctors found two tumors in his brain. Because one of the tumors was large and growing faster the normal, surgeons were able to remove it but were unable to preserve his hearing in his right ear. An auditory brainstem implant was inserted during the surgery to provide hearing support. He is currently undergoing chemotherapy every two weeks to shrink the second brain tumor. Damien also underwent successful surgery in 2014 to remove a very large tumor growing on his spine.
Ali, a senior at Mesquite High School in Gilbert, was officially diagnosed at age 13 when doctors detected two small brain tumors. Both tumors were successfully removed through two surgeries at Barrow and surgeons were able to save hearing in one ear.
Because the tumors can grow at any time, Leslie, Damien and Ali will have to be monitored throughout their lifetimes.
“If acoustic neuromas are left undiagnosed and untreated, they pose very serious threats to function and survival, and although these tumors are benign, it is a very serious genetic disease,” says Randall Porter, MD, a neurosurgeon at Barrow, who treated the Nava family and is among the nation’s leading surgeons to treat the condition.
We would not be where we are today without Barrow and the NIH. We’ve grown a lot as a family, and many blessings have occurred as a result of our health tribulations.
-Leslie Nava, Barrow Patient
The Navas are grateful for the treatment they have received at Barrow and through a national clinical trial led by the National Institute of Health (NIH). As a result, Leslie is able to teach strength and conditioning classes at the jiu jitsu gym she owns with her husband, Paul, and mentor other families who suffer from the same disease. Ali will graduate high school this year and is preparing for college. Damien is looking forward to a trip he will take to Ireland this summer on behalf of the Make-A-Wish Foundation.
“Barrow has given us beautiful lives,” says Leslie. “Although we will always need to keep a close watch on this disease, we would not be where we are today without Barrow and the NIH. We’ve grown a lot as a family, and many blessings have occurred as a result of our health tribulations.”
The Navas are among many of the families from around the world who have sought treatment at Barrow for complex medical conditions. A new Barrow campaign that features the lives of patients, like the Nava family, has been launched to highlight the complex medicine that is performed at Barrow and the dramatic difference it can make in patients’ lives.