In the Loop

News and views from across Mayo Clinic

August 29, 2017

5-Year-Old ‘Superhero’ Receives Medal for His Fight Against Neurofibromatosis

By In the Loop

The Neurofibromatosis Network recently named 5-year-old Gus Erickson its national 2017 NF Champion for the superhero-like courage and strength he’s displayed throughout his fight against the disorder with the help of his care team at Mayo Clinic.

Gus Erickson is just 5 years old, but he’s already earned superhero status for his courage and strength. The Neurofibromatosis Network recently named Gus its 2017 NF Champion for the way he’s battled the disorder. 

For nine months of his life, Gus Erickson appeared to be a happy, healthy baby boy. Then his parents began noticing flat brown “cafe au lait” spots on his legs. Concerned, they took him to his pediatrician, where they received a jolt. “He was given a diagnosis of NF,” Gus’s mom, Becky Erickson, tells KAAL-TV.

NF, or neurofibromatosis, is a genetic disorder that causes tumors to form on the body’s nerve tissue. These tumors “can develop anywhere in the nervous system, including the brain, spinal cord and on skin,” according to For Gus, the disorder would remain relatively latent until after his third birthday. Then he began showing other symptoms. “He started growing really tall, really fast and not gaining much weight,” Becky tells the station.

An MRI at Mayo Clinic’s Rochester campus revealed a “racquetball-sized tumor” on Gus’s brain. “As parents, we were terrified,” Gregg Erickson, Gus’ father, tells KAAL. A team of neurosurgeons, including David Daniels, M.D., Ph.D., and Dusica Babovic-Vuksanovic, M.D., head of Mayo’s Neurofibromatosis Clinic in Rochester, was tasked with removing the tumor.

Sending Gus into that surgery “was the hardest thing we ever did,” Becky says. “We didn’t know what kind of brain damage Gus might be left with or if we’d even get our baby back at all … We steeled ourselves for the worst.”

Fortunately, the worst never came. And their courage was rewarded. As was that of young Gus, who was named the Neurofibromatosis Network‘s 2017 NF Champion for “superhero-like courage and strength” displayed throughout his fight against neurofibromatosis. The award, KTTC-TV reports came with “a medal with his name and silhouette on it.”

Replicas of Gus’ medal will be given out at neurofibromatosis events throughout the year. That includes the NF Network member organization Gregg and Becky formed in Rochester to raise awareness and help others like them. “We got that help at the time that we needed it, and that’s what really we want to do at this point,” Gregg tells KAAL of the organization for which he serves as president and treasurer.

While the surgical procedures helped suppress Gus' symptoms, Mayo Clinic’s Discovery’s Edge reports that neurofibromatosis currently has no known cure. So Gus will continue to be “monitored by a number of specialists” within Mayo’s Neurofibromatosis Clinic to “make sure the original tumor is not coming back.”

In the meantime, Becky tells KAAL that she and Gregg will continue to do whatever they can to “spread awareness and educate people” about neurofibromatosis and that their “end game here” is to very much “find a cure.” That sounds medal-worthy to us.

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Tags: Discovery's Edge, Dr. David Daniels, Dr. Dusica Babovic, Neurofibromatosis, Patient Stories

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