Friday, May 2, 2014

NF Awareness Month: Meet Kyle!

Kyle is 5, but was diagnosed at 6 months old with NF1. He has a number of CAL spots, but they are all hidden by his clothes. He also has a few fibromas on his right foot, but they don't bother him at all, so they are just monitored to make sure they don't get any bigger or cause him pain. Kyle's right leg is bowed, and was at birth, so when he turned 1, he started wearing a clam-shell brace to protect his leg from breaking or fractures. The brace has become like a part of him, and he runs & plays with it with no problems. Kyle was also diagnosed with scoliosis about a year and a half ago. He wears a back brace to try and correct it, and also to keep it from getting worse. So far, the brace has helped him tremendously. Kyle has no known tumors, but he is monitored with yearly MRI's to make sure and to maintain. He doesn't have many of the physical characteristics of NF, but what Kyle does have are a lot of developmental delays. He has speech delays, social skills delays, and fine motor & gross motor delays. To help him with these, he receives speech, OT, & PT both through school and also through private therapists at Akron Children's & Salem Pediatric Speech Therapy. He has come a long way, but still has a bit to go to catch up to his peers. Overall, Kyle is a very happy, loving, and active boy who loves to swim, play with his cars and trucks, read, and watch his favorite show Mythbusters. NF doesn't define him at all; it's just what he has, not who he is.

*permission to share Kyle's story given by his mom, Jenn*