The Children's Tumor Foundation

02/22/2024 | Press release | Distributed by Public on 02/22/2024 08:36

Stories of NF: Conner B

When I was born, my parents did not notice anything out of the ordinary. As far as they were concerned, I was a healthy baby boy. I was born Conner B. and weighed 7 pounds 6 ounces. I was born two weeks early and all seemed fine. As I grew, things continued on a normal track until around the age of two. At two years of age, my parents recall me sitting in my highchair during lunch. As I was eating lunch, they got concerned with an odd reaction and what seemed like a seizure. Out of an abundance of caution, my parents took me into the pediatrician the get checked out. Dr. Greer looked over my small two-year-old body and found over 10 café-au-lait (dark) spots on my skin. At that point I was referred to Children's Hospital in Denver, Colorado. The doctors performed two days' worth of tests to assess my order all health. They did an MRI which identified small neurofibromas and signs within my brain that I indeed had NF1. My parents were extremely concerned of course. My dad recalls looking up information about NF on the internet and it brought both of my parents to tears. They joined a support group and spoke with doctors. They both recall the feeling of helplessness and "the black hole" that is this disease. The prognosis and severity was completely unknown. From this point on, my childhood was a little different than most young boys in that I had frequent doctors visits, appointments with specialists and a number of surgeries to address specific issues that my disease has brought on.

A defining moment in my NF journey happened just 2 days after my 18th birthday, when I got my right index finger amputated due to the tumor that was in that finger. Before that surgery, growing up, I had three other surgeries to try and remove that tumor but it grew back so fast each time. Having that finger and tumor removed that caused me so much pain both physically and emotionally was actually life changing.

Living with NF has impacted my life in both positive and negative ways. I have had a total of 12 surgeries from NF-related surgeries, as well as injuries from sports I've done, that my ligaments and joints may not have been the strongest from. I believe even the negative ways NF has impacted me have actually been positives. Even though I have been through a lot, it has only made me a stronger person and be so thankful that I didn't get NF as bad as I know others have it. That is why I want to he an advocate! I want to help and inspire even mentor those who may be experiencing some of the things I have been through or even help the families and individuals who have just gotten diagnosed with NF and may not know what to think or where to turn.

Currently what I do for a living is recruiting in the pharmaceutical industry, with hopes of going into medical device sales or possibly sales in the health and fitness industry. My family, friends, and girlfriend and my new puppy are all things that make me so incredibly happy! Other than that, what makes me happy is the gym, the gym has and always will be my paradise. I have also competed a few times in a bodybuilding competition, and I love being competitive and pushing myself to the absolute limit! Pushing myself to become a better man than I was yesterday is another thing I love about the gym.

Favorite Song
Firestone by Kygo

Dream Superpower
To be able to fly

Favorite Food
My mom's homemade spaghetti

Fun Fact
A fun fact about me is I'm an avid LEGO collector/builder