Tuesday, January 12, 2021

Case Study #94 - Jay Never Giving Up

Prep Sketch

Jay was born in September 11, 1984 and diagnosed in March of 1986 by the craniofacial team of CHLA - Children's Hospital of Los Angeles with NF. His doctor was Dr. Larry Nichter who the family then followed to CHOC (Children's Hospital of Orange County). 

When Jay was in first grade he was featured in an article with his mother to help spread NF awareness. It was his second time spreading NF Awareness for the NF Inc. Phoenix chapter. In 1st grade he did a PSA with the then Phoenix Roadrunner Hockey team. Growing up, Jay would cry and beg his mother not to send him to school. This happened from his baby carrier days, to stroller/toddler days until the 6th grade. His mother gave him sage advice saying "When kids make fun of you and point out things just say 'What good eyes you have. You are going to be an excellent scientist or detective!'" This served Jay well and was a great way to diffuse situations. Middle school was heaven because he was no longer called freak or monster, as he used his humor as a way of dealing with NF. Although one particular incident really hurt his feelings. Many of the school girls kept asking if he was going to attend the Valentine's Day Dance. He and his mother went out and bought a suit. Jay was excited and proud to go only to find out that the same group of girls who were asking if he'd go suddenly did an about face and told him that they were joking and never really thought he would come. Jay was devastated. The school principal was alerted and the girls apologized. In high school, Jay enjoyed swimming and lettered with the Coronado Swim Team.

As an adult, Jay loved the Philadelphia Eagles football team and WWE Wrestling. At one point he even got received an encouraging video from the Bella Twins while he was undergoing treatments. Throughout his adult life, Jay had his tumors debulked several times. Jay's treatment was always done in Phoenix at St. Joseph's Barrow Neurological Institute. The cyber knife/radiation is run with the University of Arizona. Jay's brain tumor turned malignant and he passed away March 6, 2020. His mother donated his brain at his request to the Ivy Tumor Center so more NF research can be done to help other NF families. The rest of his body was used for surgical research in the orthopedic field.

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