May is NF Awareness Month

Seventeen years ago my family learned of a genetic disorder called neurofibromatosis. Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

Our daughter, Mia, was just a baby when we learned she had this disorder. She had what we thought were birthmarks, but actually were a precursor to many years of educating ourselves, educating others, wondering and worrying. When Mia was 11, the disorder catapulted us into another spectrum of her disorder. She was found to have a brain tumor after having a seizure. We watch, medicate for the seizures, and wait to see if it decides to rear its ugly head within her body in other ways the disorder can manifest.

Mia is among many others who battle this disorder every day. It is our goal to bring awareness, as it has been for many years. If you would like to learn more about this disorder, visit ctf.org.

Thank you,

JEFF, MICHELLE, TYLER, MIA and MILEY SCHWETTMAN, Scott City