Meet Kevin. Kevin was diagnosed with NF when he was two years old.
“I was diagnosed because of multiple cafe au lait and Inguinal freckling as well as Lisch nodules. I had been born at term but on a respirator for 7 days then home with a heart monitor for 3 months. I began having trouble with hyper flexibility and low muscle tone and weakness on one side. I participated in physical and occupational therapy, but I had trouble participating in sports due to low endurance, fatigue, and back pain.
Most recently I have struggled with anxiety and depression requiring hospitalization. The need to fit in is great. Having something that makes you look and feel different is always in the back of your mind. I have not been followed by an NF doctor in some time as it felt ok to keep it in the background and keep anxiety at bay. Presently I am having an increase in headaches and some painful sc Fibromas in my leg so it is really time to be seen.”
B Kind paid for the accommodations for Kevin to be seen by an out-of-state NF specialist as the only specialists available locally were for children. The one-night stay turned into a four-night stay due to quarantining restrictions at the medical center.