Connor
Connor is an intelligent, curious amazing 16-year old teen guy. He is currently in the 11th grade and while he is home-bound, he is an exceptional student. Connor loves learning, and especially enjoys computers and technology. He also enjoys studying languages, he completed 3 years of Latin and is still active in the Latin Club. When he’s not reading on his Kindle, he’s playing music on his electric keyboard, surfing the web, cooking, hanging out with his pets or riding his 3-wheeled bike. He hopes to be a music minister one day and plans to begin college course during his Senior Year in high school.
Connor is a blessed child. He has a very supportive family, church family and huge network of friends and supporters. He is passionate about fundraising for NF research and eager to spread awareness. Connor has a fundraising team ‘Connor’s Crew’ that works to raise funds for research. Connor’s Crew has a Facebook page and Connor prides himself in the size and scope of his team. He is indeed an NF hero! He doesn’t quite know or understand the depth of how he has touched and inspired many people already in his 16 years.
Connor was born a healthy normal active baby. At 16 months, after noticing his left eye turning, it was discovered that he had a juvenile cataract. His first surgery was performed at 18months. Following that surgery, it was noticed, during a routine follow-up, that Connor’s optic nerve was swollen. We rushed Connor for an emergency MRI and a lumbar puncture. Connor was found to have unexplained elevated cerebral spinal fluid. Connor had repeated lumbar punctures to check the fluid level & drain off excess fluid. During this time, Connor had 3 hour MRI’s every 6 months to monitor his brain. At the age of 4 we heard what every parent dreads. Connor had a brain tumor. Not having a proper diagnosis we all feared this to be a cancerous tumor. So, at the age of 4 Connor went through his first craniotomy. Following this surgery, with tumor tissue tested, Connor was finally given the proper diagnosis of Neurofibromatosis Type 2.
The diagnosis of Neurofibromatosis Type 2 was devastating and scary but at least he now had a diagnosis. Connor has endured 6 brain surgeries, thus far. In November 2011, Connor lost his right eye to an optic nerve tumor. After months of pain, Connor awoke from surgery & said “I never knew it could feel so good to have my eye out.” In October 2012, he had a craniotomy at the National Institute of Health that took 17 hours. This child is amazing! A week later, when staples were removed, Connor counted 64 staples from ear to ear and said it didn’t even hurt. Most recently, Connor’s battles are with seizures and anxiety caused by his brain tumor burden. His wonderful care team at Children’s Medical Center in Dallas is managing most of his health care needs. For 5 years, Connor was a part of a study at the National Institute of Health and traveled there every 6 months for 3-4 hour MRI’s, audiology testing and eye exams. With many battles still to face, Connor has a love for people, animals, life and God that remains untouched.