Our family lives with a rare genetic condition called Neurofibromatosis Type 1 (NF1), NF1, a hereditary condition, causes tumors to grow on nerves throughout the body, along with other symptoms like café-au-lait spots, tumor skin growths, bone abnormalities, higher risks for cancer, and developmental delays.

My 19-month-old son, James, was born with tibial and fibular bowing (pseudoarthrosis) and has a small spinal tumor, low muscle tone, and a larger-than-average head — all linked to NF1. He’s currently undergoing guided growth surgery to help correct his leg. My 3-year-old daughter,

Evelyn, has small fibromas, café-au-lait spots, and experienced delays in walking. They both see an NF specialist  and ophthalmologist to monitor for complications like optic nerve tumors.

Living with NF1 means constant monitoring, expensive specialist visits, and uncertainty about what the future holds as the condition is unpredictable and there’s no way of telling how it will manifest in the future, but we do our part in doing what we can to make sure our kids stay as healthy as possible for better hopeful outcomes for their future. To learn more about our condition check out CTF.ORG