Grayson Boy, 4, Faces Extensive Surgery After Neurofibromatosis Diagnosis

Grayson, GA - Tyler Clendenen is an energetic, loving, full of life 4-year-old who was diagnosed with neurofibromatosis type 1 (NF1) at the age of 3 months. NF1 causes benign tumors to grow on the nervous system and as of today there is not a cure. Tyler has a plexiform tumor located behind his left eye and extending down his check. This tumor has been growing aggressively since birth and all attempts to slow the growth including chemo have failed.

In an effort to stop the growth, Tyler will require two extensive surgeries with extended hospital stays in Chicago over the next 6-8 months. The surgery is being performed by noted cranial facial surgeon, Dr. McKay McKinnon, who was recently featured in a TLC documentary for taking on some of the most difficult plexiform tumor removal cases in the world.

Insurance will only cover a portion of the medical expenses and the family must travel for each operation. The Clendenen family is accepting donations to help offset some of their growing expenses. Additionally, they are selling silicone bracelets as a first fundraiser to help cover these costs. You can visit their Facebook page, Keeping up with Tyler, to learn more about Tyler or visit the family’s website at www.everybodyshero.com.

Bracelets are a suggested $5 donation and all proceeds go directly to the Clendenen family!  Bracelets can be purchased online visiting www.everybodyshero.com.

You can visit his Facebook page, Keeping up with Tyler, to learn more about him or visit the family’s website at www.everybodyshero.com.

What is Neurofibromatosis (NF)?

NF 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, we can help to find treatments that will suppress the growth of NF tumors, and avoid many of the complications that NF presents.

(Contributed by Christine Parker)