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Stories of NF: Parker W.

By March 21, 2019December 5th, 2023NF1, Story of NF

We learned of Parker’s diagnosis of NF1 at his 18 month checkup when we pointed out his cafe au lait marks. They did a blood test to confirm; Parker’s dad also has NF1.

We are fortunate that NF doesn’t impact our day to day life too much. After the initial diagnosis we had doctor appointments every 3 months or so and Parker spent his preschool years going to speech therapy. He had his first MRI at 18 months. It was then they found the 2 optic gliomas. We followed them with MRI and ophthalmology appointments every 3 months gradually getting to once a year until he was 5. A few weeks after he turned 5, MRI scans showed a new tumor blocking the aqueduct of sylvius causing hydrocephalus. He had brain surgery the next day. He has had 2 more brain surgeries since then. He is now 7 and doing well.

Parker is a friendly and loving 7 year old in the 2nd grade. Although school is a little hard he does well and tries his best. He loves school and everyone there. He likes to play kickball and soccer at recess. Outside of school he plays little league baseball and likes to swim. Parker also played his first season of soccer and loved that too. This summer he learned to boogie board and went on a paddle board with mom. He is a big brother. When Parker grows up he wants to be a fireman, or maybe study the weather.

Parker doesn’t let his NF hold him back. He lives every day to the fullest and with a smile on his face. We have participated in our local NF walk a few times raising money and spreading awareness.

-Kristen, Parker’s mom



Dream vacation He wants to see the volcano in Hawaii

Favorite Song Blitskreig Bop by the Ramones

Superpower To fly