My name is Seth Gregorash, and I was born with a genetic disorter called neurofibromatosis (NF1).
NF can cause tumors to grow on nerves on or in my body. NF may lead to blindness, deafness, brain and spinal tumors, severe disfigurement, bone abnormalities, developmental delays and learning disabilities.
I was diagnosed with NF when I was three months old. My parents were concerned with a curve in my leg and had it x-rayed in Brandon. We were quickly sent to an orthopedic doctor at the Children’s Hospital in Winnipeg. The doctor explained to us that Seth had pseudarthrosis, and would need to be braced; the doctor also said that this bone abnormality is often linked with Neurofibromatosis. or NF.
This was all very overwhelming for my parents, but over the years they have researched NF and learned these words as well as many other medical terms in association with NF.
As I grew up, I developed many of the landmarks of NF. I have many café au lait spots (they look like birth marks) as well as many pea-sized bumps/tumors on my body. I have gone through some speech therapy and leg therapy throughout my childhood.
By the age of three there were bigger concerns. The bone in my chest was continually growing more disfigured and was x-rayed. We were sent to more doctors who sent me for a cat scan and an MRI. Two lesions were found in my brain and a large plexiform tumor was found in my chest. These tumors have finger like extensions, it is close to my heart and lungs, carotid artery, trachea and brachioplexis. My family was told that surgery is very risky and will possibly leave some sort of deficit in our son. So we continue to monitor my body through MRI visits once every year.
As time went on, my ankle started to collapse. I required corrective surgery in November of 2012 in Winnipeg. After an unsuccessful surgery that would not properly heal, we headed to the Shriner’s Hospital in Montreal a year later. This surgeon specialized with NF bone problems. A ilizarov/external-fixator (very invasive and solid metal contraption) was surgically attached to my tibia after a bone graft from my hip. The healing started after 4 months of wearing the ilizarov, but my femur broke from a simple fall while still wearing the device. My third leg surgery took place in May, 2014. The healing on all of my bones have been very slow, but has been progressing.
As of today, my leg is still slightly weaker than I’d like it to be, and my left leg is shorter than my right leg! To help with the height difference, I get the soles of my shoes specially lifted up to match the length of my right leg.