Seth Gregorash of Minnedosa is an eight-year-old boy who has neurofibromatosis (NF1).

NF is a genetic disorder that can cause tumors to grow on nerves on or in his body. NF may lead to blindness, deafness, brain and spinal tumors, severe disfigurement, bone abnormalities, developmental delays and learning disabilities. We discovered Seth had NF when he was three months old. We were concerned with a curve in his leg and had it x-rayed in Brandon. We were quickly sent to an orthopedic doctor at the Children’s Hospital in Winnipeg. He explained to us that Seth had psuedoarthrosis and would need to be braced; he also said that this bone abnormality is often linked with neurofibromatosis. NF.

This was all very overwhelming but over the years we have researched NF and learned these words as well as many other medical terms in association with NF. What choice did we have?!

Seth developed many of the landmarks of NF. He has many café au lait spots (they look like birth marks) as well as many pea-sized bumps on his body. He has had some speech therapy and leg therapy. By the age of three we had bigger concerns. The bone in his chest was continually growing more disfigured and was x-rayed. We were sent to more doctors who sent him for a cat scan and an MRI. Two lesions were found in his brain and a large plexiform tumor was found in his chest. These tumors have finger like extensions, it is close to his heart and lungs, carotid artery, trachea and brachioplexis. We are told that surgery is very risky and will possibly leave some sort of deficit in our son. So we continue to monitor Seth very closely with numerous doctors and MRI’s every 3 months. We also do a lot of praying!

The good news is Seth functions as a normal 8 year old. He is quick to give a hug or smile and enjoys playing at school and home with his family and friends. He loves piano and has a special uniqueness that is his very own.

I’m hoping this explains to you why I run, organize runs and spread awareness on a disorder that gets very little attention. I thank you for taking the time to read this.