BENEFITING: Cornelia de Lange Syndrome Foundation, Inc.
EVENT DATE: Aug 15, 2015
For several years Todd has raced in the West Point Triathlon in support of a charitable endeavor that is close to his family. The 2015 races are August 15th and 16th and is also proud to say that hischildren (Dylan 13 and Hope 5) will be running the kids’ race in support of their cousin and other CdLS kids. Monte is 27 months old and was born with Cornelia de Lange Syndrome (CdLS), which is a rare genetic disorder that affects approximately 1 in every 10,000 people. This syndrome causes a range of physical, cognitive, and medical challenges. Monte is significantly small for his age (27 months old/ approximately 16 lbs.), has only two functional fingers on his right hand, a severe hearing loss in both ears, and is delayed in most areas of his development. With the help of weekly physical, occupational, and speech therapies Monte has been making continual progress in all areas of his development. Monte is currently learning to walk with the assistance of a gait trainer and he is learning several basic “signs” to communicate his needs, among many other skills. So far Monte’s greatest success has been his attitude and outlook on life. He loves meal time especially ice cream, spaghetti, French fries, scrambled eggs, and chocolate cake. He loves the water, toy rings, music, lights, and sounds. He likes being outside on a warm summer day, playing in a sand box, and going on the swing set. Monte likes to laugh and smile and loves just about anyone who has ever held him in their arms.