Gabe's life: a lot more than neurofibromatosis

By EMILY BENSON- | Comments: 0 | Leave a comment

Gabe Donovan loves video games, playing with his three older brothers, reading and going to the theater. He's an eighth-grader at Christian Brothers Academy in Albany and an altar server at Mater Christi parish in Albany. He has served meals to the hungry at the Welcome Table operated by St. John's/St. Ann's Outreach Center in Albany.

Gabe is quick to crack a joke: He wasn't a water boy for the Holy Trinity football team, he says, but a "volunteer hydration consultant." (Holy Trinity's players, including Gabe's brother, come from Notre Dame-Bishop Gibbons School in Schenectady and Catholic Central High in Troy.)

Gabe also has multiple brain tumors. At just six months old, he was diagnosed with a rare neurological disorder called neurofibromatosis (NF), which causes the growth of tumors along nerves in the skin, brain and other parts of the body. He has undergone rounds of chemotherapy, many broken bones and hundreds of doctors' appointments.

Sharp, witty, articulate and wise beyond his years, Gabe has had to grapple with his mortality before even learning to drive. But that's not the focus of his story.

"I'm not a 'poor little sick kid,'" he told The Evangelist. "I play video games. I watch sporting events. I go to church. I do charity work. I'm not different; I just have different genes."

Maureen O'Brien, Gabe's mother, says there are a few obstacles for him. Having a neurological disorder affects motor skills, for instance.

"It affects how you learn, how you walk, how you talk," she explained. "But he just learns a little bit differently, and does [things like] gym class a little bit differently."

Gabe says he isn't frustrated by that: It was always the normal for him.

One of the eighth-grader's biggest passions is talking about Double H Ranch, a summer camp for children dealing with life-threatening illnesses, located in Lake Luzerne. Gabe began attending the camp when he was six years old and looks forward to going back every year.

He loves hanging out with friends, fishing and being part of the Wish Boat Ceremony: At the end of camp, participants write their wishes on paper, put them on miniature wooden sailboats and send them off across the lake.

Double H has had such a huge impact on Gabe that his mother calls him "a spokesperson" for the camp. He knows that Double H Ranch was created in 1993 by philanthropist Charles R. Wood and actor Paul Newman, and that they partnered with the Six Flags/Great Escape amusement park in Lake George so that, once a week during a camp session, campers can go to the park for free.

In October, Dr. Dennis McKenna, a CBA alum and Double H Ranch board member, came to the school to talk about the camp. He invited Gabe to join him onstage, so students could ask their peer about his time at the camp.

Roger Powers, middle school assistant principal, told The Evangelist that students kept approaching him afterward the talk, asking if they could volunteer at Double H. In response, CBA organized a service day. In November, Gabe's eighth-grade class went to the camp to do groundskeeping.

Gabe said he was glad he was able to get his classmates out of school for a day, though he remarked that raking leaves is "not my forte."

In his talk at CBA, Gabe remembered how he used his a wish granted to him by the Make-a-Wish Foundation to restore the barn area at Double H. He chose that to honor his best friend at camp, Michael, who passed away from NF.

Gabe became close with Michael's family even after his death. Michael's father, who is a licensed pilot, took Gabe for an airplane ride and even let him steer for a bit. "That was frightening," Gabe admitted, laughing.

Having a relationship with God also helps Gabe. Given his condition and that of his friends at Double H, faith gives him comfort.

"It's reassuring that there's always something more," he said. "If there was ever a chance I got very sick, or if someone at Double H got very sick...they'll be somewhere better. I know that this is not the end."

Recently, Gabe has been having a healthy streak. A team at Albany Medical Center oversees his care, and he visits a specialist group in Washington, D.C., twice a year.

Mrs. O'Brien says that it's important for her to also do something fun whenever they go to doctors. She doesn't want Gabe to lose his childhood to a disease.

"You have to make it fun," she said. "When we travel to D.C. to see his team, we'll go to a baseball game. Or, when we go to Albany Med, they'll let him put on the lab coat. Just build in things that make the appointments less onerous."

Gabe has a lot of plans. He's been cast as Tweedle-Dee in CBA's spring play, "Shrek: The Musical," and he hopes to continue performing in plays. His career goal is to become a history teacher.

It could be the future for any normal eighth-grader. But, in Gabe's case, normal may not be good enough.

"When he was first diagnosed, I said to a doctor, 'Is he going to have a normal life?'" Mrs. O'Brien recounted. "And I remember the doctor said to me, 'Why don't we have a goal of an extraordinary life?'"[[In-content Ad]]