I am participating in Steps2Cure NF to raise awareness and support for those affected by neurofibromatosis (NF), a genetic disorder that causes tumors to form on nerves throughout the body.
Our son Joshua is such a free spirit! Josh is 6 years old and was diagnosed with NF type 1 at the age of four, a condition that causes tumors to form on the nerve tissues, brain, and spine when his pediatrician noticed he had an overwhelming amount of café au lait spots on his body. Our world stopped right then and there, like most people we had never even heard of NF before. However, after many appointments and consultations things about Josh began to fall into place and make more sense. He wore a helmet as a baby, need early intervention services, and had trouble with speech. Currently a large part of Joshua’s NF impacts his behavior and learning.
Josh has been working very hard in social settings and in school and has endured a lot in his life but his excitement for life brings laughs where ever he goes. Even though he will continue to have struggles and the complexities of NF are very overwhelming because there are so many unknowns and everyone’s journey is different we are confident his bright light will help him through.
Josh loves watching football with his family, playing with his cousins, and creating art. When he grows up he wants to be a scientist and work at Disney’s Animal Kingdom taking care of the animals. The world truly needs more Joshua’s and we couldn’t be more proud of him!
The money raised will support the mission of NF Northeast, funding patient support programs, advocacy efforts, and cutting edge research, and will provide hope and help to individuals and families impacted by NF. Every step I take brings us closer to better treatments, increased awareness, and a brighter future—thank you for your support!