LegoBoyLoric )
I was born with Neurofibromatosis, or NF for short. There are three types of NF with varying symptoms, I was diagnosed with NF1 when I was five years old. NF is a genetic disorder that can cause many different medical difficulties such as bone deformities, learning disabilities and tumor growth to name a few. Generally NF tumors are not cancerous but they can be in bad places, mainl
y on nerve endings. It wasn’t until I was ten years old that NF really started affecting my life. Before then I only had the characteristic signs of NF such as multiple café-Au let’ spots all over my body (which are like birth marks) and a left shoulder winged-scapula which limits the range of motion on my left arm. March of 2015 I had my first MRI of my spine and brain and it showed a marble-sized tumor right near the Cerebellum (the control box for the brain). The doctors successfully removed it on April 24th 2015. October 2016 I was diagnosed with an Optic Nerve tumor on my right eye that was causing vision damage. Since the doctors couldn't operate on that one I went through just over a year of Chemotherapy, undergoing forty-two treatments. The treatments were successful in stopping the tumor growth however I did lose some field of vision in my right eye. I was followed closely with MRI scans every 3 months for that first year, continuing with every 6 months the year after that when the scans were clean. Now I will continue having MRI scans every 2 years to monitor the Optic Nerve tumor and to watch for any new NF tumors. I’m a 16 year old homeschooled kid that loves to do boy stuff like riding bikes, dancing, swimming and wrestling with my brothers. I Got my driver's license this year and have started a part-time job at Lake Quinault Lodge. I also LOVE LEGOS!!!! Especially Star Wars! I took a set to every chemotherapy treatment to keep my mind off other stuff going on for the day-long appointments. I know my NF journey is far from over but I hope that I can help people learn about NF through my journey and make some new friends too. I also hope that the NF researchers find a cure soon! Please keep me in your prayers! Take a moment to check out the Children's Tumor Foundation to learn more about NF. One Brick at a Time!
#LegoBoyLoric
12/19/2024
