Seth Gregorash of Minnedosa is a 15 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 pseudarthrosis and would need to be braced; he also said that this bone abnormality is often linked with neurofibromatosis. or 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!
In more recent years, Seth’s ankle started to collapse. He required corrective surgery in Nov., 2012 in Winnipeg. When we realized this surgery would not “heal” we headed to the Shriner’s Hospital in Montreal a year later. This surgeon specialized with NF bone problems. A lizerov (very invasive and solid metal contraption) was surgically attached to his tibia after a bone graft from Seth’s hip. The healing started after 4 months of wearing the lizerov but, his femur broke from a simple fall. Seth’s third leg surgery took place in May, 2014. The healing on all of his bones has been very slow, but is progressing. Seth is wearing an air cast until we head to see his surgeon in Montreal again soon.
The good news is Seth is like any other 15 year old. He is quick to smile and enjoys visiting with friends. His is also happy hanging around the house with his family, dog and computer . He is great at art, computers, piano and bowling.
Seth and our family appreciate the members of our support group and know what a difference it makes to raise awareness about NF and be surrounded by loving friends and family. Overcoming adversity for our family has been by God’s grace and the people He has chose to surround us with.