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Stories of NF: Dylan P.

By October 8, 2019February 5th, 2024NF1, Story of NF

When Dylan was 18 months old, our pediatrician sent us to a neurologist due to his developmental delays. The neurologist said she suspected neurofibromatosis because of his cafe au lait birth marks and ordered an MRI, which came back clean. She asked us to come back when he was 3-4 years old for a follow up appointment. We made another appointment with the neurologist at 3 and a half years old and she ordered an MRI. The MRI showed a brain tumor and hydrocephalus. They admitted Dylan immediately for brain surgery to place a shunt. Doctors determined the brain tumor was inoperable since it was in the cerebellum.

Dylan has a brain tumor, shunt, and had a tumor removed from his neck where doctors cut a nerve. He also has a plexiform tumor on the back of his head. He had a full time aide all the way through school to support him academically. Currently he attends college in the inclusive services program, majoring in criminal justice. He has requested no support from professors and other students that support inclusive education students. His grades are Bs and Cs. He lives in an apartment with his sister who is also a student at the same school and works at a cafeteria at the University. Since he can’t drive he rides the bus to and from college and work.

Dylan is the strongest person I know! There have been several ups and downs with Dylan’s health since his diagnosis. Some years, there was just an annual exam and MRI. Other years, I felt my heart was being torn from my chest as Dylan endured placement of a shunt for fluid drainage from his brain to his abdomen, double hernia surgery, port placement surgery for chemotherapy, eighteen months of chemotherapy during kindergarten and first grade, removal of a neck tumor, port removal, and shunt revision. Dylan graduated from high school in 2011 and has applied for more jobs than anyone I know with no success.

In the fall of 2017, Dylan entered UCCS in their new inclusive education program. He has been successful with grades and also has a job in a university cafeteria. He has never given up and continues to stay motivated as an encourager and advocate for himself, as well as others. Currently, he is advocating for students with disabilities at UCCS to be able to walk at graduation with other students.

Dylan enjoys going to church and spending time with family. He loves Legos and going to the Lego store is a treat. He also works twelve hours a week at a university cafeteria. He hopes to get a job in criminal justice after he graduates.

-Janette, Dylan’s mom



Family matters

Favorite song 
Celebrity by Brad Paisley

Dream vacation 
Logoland in California