Jackson DeCillis

Jackson is our NF Hero. He was born with what we were told was hyper pigmentation. At just 6 weeks, during a diaper change, we found a lump in his back that would change our lives. That lump prompted numerous doctors appointments. By the mere age of 3 months, Jackson had been to a Pediatric Neurologist, Opthamologist, Dermatologist, Orthopedist, and Neurosurgeon.. as well as having to be put under for his first MRI. It was then that we learned what a Plexiforma is, what Neurofibromatosis was… and that our little boy was a true warrior. NF is scary because of the unknown but we are certain that soon enough, there will be a cure. So just like our Hero Jackson, we are going to smile in the face of NF and run in the freezing cold to help make a difference and help fund research for all the NF hero’s.