My Life Beyond Neurofibromatosis
My Life Beyond Neurofibromatosis
$8.99
A Mayo Clinic patient story
By Hey Gee • As told by G.W. Page • Edited by Dusica Babovic-Vuksanovic, M.D. • Illustrated by Hey Gee
- Neurofibromatosis type 1 (NF1) is an inherited (genetic) disorder caused by changes (mutations) in the NF1 gene, a tumor suppressor gene.
- Researchers hope to develop treatment for other complications of NF1 — and, eventually, a cure.
- Beautifully illustrated pages tell G.W.’s story of Leo, a young boy with neurofibromatosi, and his trip to see New York’s famous T. rex skeleton.
The facts
1 in 3000
affected by neurofibromatosis type 1 (NF1), an inherited (genetic) disorder
Description
G.W. Page was diagnosed with a rare genetic condition called neurofibromatosis (NF) as a baby, after his mom noticed some new birthmark-type spots on his legs. When he was 3 years old, an MRI revealed a large tumor in G.W.’s brain, requiring surgery to remove it.
Now at age 10, G.W. has an extensive team of doctors who routinely monitor him for new tumors or other NF-related problems, which can be very unpredictable. With his positive outlook and fierce courage, even as the youngest of his siblings, he sets a big example for his family about choosing how to react when things go wrong or when they are afraid. He loves playing sports, creating art, fishing, fantasy football, cooking with his dad, and being a goofball with his big sisters. When he grows up, G.W. hopes to become a professional sports analyst.
My Life Beyond Neurofibromatosis: A Mayo Clinic patient story is part of the My Life Beyond graphic novel series. Created through collaboration among pediatric patients, their doctors, and children’s author and illustrator Hey Gee, each book in the series dives into the mind and imagination of a child patient at Mayo Clinic to explain how children experience illness, challenges, and recovery.
2022 • 35 pages • Mayo Clinic Press
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