Gus was a healthy, happy baby-the little brother his two big sisters didn't know they wanted until he was born. Gus was diagnosed with Neurofibromatosis Type 1 (NF1) at 10 months old. Not having ever heard of this rare, neurological disorder before, we did our research & quickly learned about all of the physical & cognitive complications that NF can bring. And then we decided to hope for the best. When Gus was 3 years old, we received the nightmarish news that our little boy had a brain tumor: a racquetball-sized mass pressing down on his pituitary stalk, growing into his hypothalamus, stretching his optic nerves apart, & choking off the supply of cerebral spinal fluid in his brain. Hydrocephaly had begun & Gus' surgeon told us that we couldn't wait. Terrified, we handed our little boy over to the neurosurgery team at Mayo Clinic. It was the hardest thing we've ever done. It was the longest day we've ever lived. 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. Although his recovery involved some scary complications, he sustained no known cognitive impairments. It was then that we stopped passively hoping, connected with the NF Network, and started advocating. When he was a kindergartner, Gus was diagnosed with Precocious Puberty, a condition often associated with hypothalamic brain tumors in children. For 5&1/2 years, Gus underwent a hormone injection regimen to slow his physical growth & delay the onset of early puberty. The side effects include frequent headaches, nausea & vomiting which aren't fun for a kid who hates to miss a practice or a day of school, but he rallies. Lucky for Gus, a negative attitude isn't in his skill set. Gus is now 11 years old. He loves playing sports, making people laugh, fishing the walleye out of Minnesota lakes, and schooling grown-ups on NFL stats & power rankings. Today, he is followed closely by a team of neurologists, oncologists, dermatologists, geneticists, ophthalmologists & endocrinologists. He undergoes routine MRIs to scan for any new brain changes & monitor the two optic glioma tumors behind his eyes that have remained stable since he was little. Our family is hopeful and confident that the federal research dollars the NF Network Advocacy Program work so tirelessly to secure--year after year--will continue, to fund the Army's NF Research Program in its mission to realize more treatments and, ultimately, a cure for NF someday soon! Gus' sketches include: NF Network Logo (#Represent!) NF Team Jersey (Did we mention he's a sports fan?) Jaguar (Gus' elementary school mascot)

Original Artwork (5"x7") by Gus Erickson for SketchNF Spring 2023

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