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Gabe's Story

Overcoming Neurofibromatosis Type 1

Gabe smiling outsideWhile attending his political science class, Gabe finally received the email he had been anxiously waiting for: he had been awarded a Presidential Scholarship and accepted into the honors program at Villanova University. His tuition, room, board, fees and textbooks would be covered for the next four years. 

Shaking with excitement, he knew he had to call his mom, Maureen, right away. When she heard the news, she cried. 

It was an achievement made even more impressive because of Gabe’s diagnosis of neurofibromatosis type 1 (NF1) at six months of age. “Gabe’s academic success is not something that’s common with kids who have NF,” Maureen explained. 

A Beautiful Brain

“[This success] shows Gabe’s great drive and his ability to overcome deficits,” said Roger Packer, M.D., director of the Gilbert Neurofibromatosis Institute at Children’s National Hospital. Dr. Packer first started treating Gabe for NF1 over ten years ago. 

woman and man smiling outside togetherChildren with this congenital condition often develop tumors throughout their bodies. “I was diagnosed with my first brain tumor on my first day of kindergarten,” Gabe said. The brain tumors affected his motor skills and resulted in learning difficulties. Gabe has been diagnosed with attention-deficit/hyperactivity disorder (ADHD), autism, dyslexia and dysgraphia. Despite all these challenges, he has not let NF1 hold him back.

“He has figured out, with the right accommodations, how to be really successful academically,” Maureen said of her son. “It’s a beautiful brain.” 

A Multidisciplinary Approach to Care

Gabe and his family live in upstate New York, where many of their local medical professionals did not see a lot of NF1, which occurs in one out of approximately 3,500 births. “We were a little bit in the dark on what you do, how you do it,” Maureen explained. But that changed when Maureen learned about the NF program at Children’s National from Dan Gilbert, the owner of the Cleveland Cavaliers. Through a contact at work, Maureen met Gilbert, whose son Nick also has NF1. He recommended that Gabe see Dr. Packer. “So we took him up on his offer to introduce us,’” said Maureen. “That was really when Gabe’s care changed.”

Gabe dressed in ROTC uniform at graduationIn the beginning, when Gabe was undergoing chemotherapy for two active brain tumors, the family traveled to Children’s National twice a year for appointments with various specialists. “The care of children with neurofibromatosis is very multidisciplinary. It has to be tailored to the needs of the child,” explained Dr. Packer. In addition to Dr. Packer, Gabe has seen a variety of specialists including oncologists, neuropsychologists, neuro ophthalmologists, endocrinologists and geneticists. Working together, Gabe’s team at Children’s National was able to create the best plan to remediate the challenges he has faced because of his NF1 diagnosis, said Dr. Packer. 

“All of these providers are experts in NF,” Maureen said. “So you’re not just seeing a neuro-ophthalmologist. You’re seeing a neuro-ophthalmologist who has looked at dozens of optic pathways and gliomas in kids with NF.” Because his tumors are currently stable, Gabe now sees his doctors at Children’s National once a year. 

An Opportunity to Succeed

Throughout all of the treatments, doctor’s appointments, and trips to Washington, D.C., over the past 10 years, Gabe’s family never took ‘no’ for an answer, Dr. Packer said. “I think what patients like Gabe show me is how important it is for us to give them every opportunity to succeed, and that their success keeps us going as clinicians and physicians, and as scientists in the field of neurofibromatosis. We realize what is possible and we don’t settle for the status quo. We thank Gabe and his family for teaching us those lessons so we can continue to do what we're doing and we strive to be better because of outcomes like Gabe's.”

Treatment Team

  • Roger Packer

    Roger Packer
    Senior Vice President, Center for Neuroscience and Behavioral Medicine
    Director, Gilbert Neurofibromatosis Institute
    Director, Brain Tumor Institute

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