Joshua King

We were told about NF when Joshua was just 2 weeks old. We didn’t get an actual diagnosis until he was 6 years old though. Joshua is a sweet, kind little soul. He struggles in school, and because of his NF he is intellectually disabled. He deals with speech and cognitive issues. He has tumors all throughout the inside of his body, an enlarged optic nerve, and a large plexiform tumor on his back. He has had surgery on the tumor on his back. At the time, his doctors, who don’t know much about NF, thought it was a lipoma. After a long 4 hour surgery they sadly came out to tell us that it was actually a 12 cm long tumor. Since they are so complex, they cannot remove it. It was only debulked. It is slowly growing back. He has yearly MRI’s to watch his optic nerve, to ensure it isn’t turning into a glioma. Although with everything he struggles with, he is the happiest, sweetest little boy. He is an absolute joy, and we couldn’t be prouder of our brave little boy.