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Stories of NF: Jay H.

By June 25, 2020December 5th, 2023NF1, Story of NF

When Jay was two months old we noticed he had café au lait spots. We were passed along the doctor chain till we landed at the University of Chicago NF Clinic with Dr. Tonsgard.

Jay is being monitored for an optic nerve glioma, and has had some developmental delays. As an infant there were concerns with his blood pressure, but those have since resolved. Other than being poked all the time Jay doesn’t seem to be bothered in the slightest. He is happy and full of energy and love.

Since Jay was diagnosed we have been trying to spread awareness. At only 10 months old, he was the top fundraiser for the CTF Chicagoland NF Walk. Jay has raised money for research and NF support multiple times in multiple capacities. We plan to continue to advocate and create awareness for NF from here on out. Jay is a fighter with many who want to fight along his side.

Jay is a silly boy who is obsessed with Cookie Monster and cookies in general. So much so, the word cookie is not to be spoken in our house unless you have cookies. He also loves Woody from Toy Story, probably because Woody is always taking care of everyone. Jay loves to care for his baby brother and anyone he can. He is sweet and easy to be around. All of his doctors, nurses, and therapist love him and constantly comment on how charming and cooperative he is. He is a shining light in our world.

-Laura, Jay’s mom


“Thank you,” he says it all the time in the sweetest voice, a grateful boy despite it all

Favorite song
C is for Cookie

He would love the ability to make cookies appear at any time