Our son Colin was 6 years old when he was diagnosed with NF1. NF (neurofibromatosis) is a rare and debilitating genetic disorder which can cause tumors to grow at an uncontrollable rate throughout the nervous system, resulting in blindness, deafness, learning disabilities and severe chronic pain. We knew something was wrong when Colin was very young and had trouble communicating and ambulating. We began to see spots on his skin, which we later learned were called cafe-au-lait spots. Colin was practically diagnosed instantaneously by his pediatrician, since two symptoms of NF1 were present, and we were sent to a geneticist who, after some tests, confirmed the diagnosis. That day was one of our worst days. As any parent knows, the mere thought of our child having a genetic disorder was crushing, and we learned that our sweet Colin's future was unknown. Luckily, Colin continues to live a normal child's life, playing baseball, swimming, and spending time with his friends, but he also has to have annual MRIs and eye exams to monitor developing tumors. These days, any time Colin complains of an ache or pain, we fear the worst and have to rush to the doctor.
Since Colin's diagnosis, we have become involved with the Children's Tumor Foundation, raising money for research for NF1. We began hosting our annual golf outing which has so far successfully raised over $500,000! In 2016, we received official 501c3 status and we intend to grow this charity each year, with the goal of one day being able to help a family directly with medical costs.
The Colin Courageous Foundation is now our mission - we will not stop until there is a cure!