Last December, 5-year-old Tyler Clendenen underwent a 12-hour surgery to remove sections of an extensive Neurofibromatosis Type 1 (NF1) tumor from behind his left eye and extending down his check.
Due to the complicated and time-consuming process of identifying healthy facial nerves before removing tumors, noted cranial facial surgeon Dr. McKay McKinnon was unable to accomplish all of his objectives.
He will perform a second surgery to remove additional tumors from behind the ear and to open the afflicted eye through reconstructive efforts. McKinnon has gained worldwide notoriety for taking on some of the most difficult tumor cases and has been featured on several TLC documentaries, according to a news release.
Tyler, who has already tackled several surgeries and underwent chemotherapy treatment since he was 3 month old, is not letting this latest challenge dampen his holiday spirits and is looking forward to participating in the Grayson United Methodist Kindergarten program which was moved to allow him to participate in. While in Chicago, he looks forward to hopefully seeing snow and enjoying the holiday festivities the hospital offers children who are hospitalized during the holiday season.
Any holiday cards or well wishes can be sent to Tyler at P.O 340, Grayson, GA 30017. To follow Tyler’s progress or to learn more about NF1, visit his Facebook page Keeping up with Tyler or visit his website at www.everybodyshero.com.
Neurofibromatosis is a genetic disorder that causes benign tumors to grow on nerves in the body. The tumors can be visible or hidden deep inside. It is a progressive disorder that accumulates throughout a person's life, at variable rates.
There are three defined types of neurofibromatosis: NF1, NF2, & Schwannomatosis. NF1 is one of the most common genetic disorders in the world affecting nearly 1 in 3,000.
Half of all NF cases are spontaneous, without any previous family history. There is no method to predict when, where or how large the tumors will grow. Complications vary depending on the size and location of the tumors, but can lead to debilitating results, and are sometimes life threatening. NF can also increase the risk of certain cancers.
There is no treatment for NF. Surgery and chemo have very limited effects. By supporting research, the medical community can help to find treatments that will suppress the growth of NF tumors, and avoid many of the complications that NF presents.