Miles for Emi

We are proud to be participating in Steps2Cure NF—not just to raise awareness, but for someone who means everything to us: our four year old daughter, Emilia.

At just 6 months old, Emilia was diagnosed with Neurofibromatosis Type 1 (NF1), a genetic condition that some of its symptoms are tumors growing on the nerves throughout the body, along with vision problems, chronic pain, bone abnormalities, neurological complications, and many other challenges. Every case and every patient is different. Since her diagnosis, Emilia’s journey has been filled with ongoing monitoring, multiple specialists, and frequent appointments. Now, at just four years old, we discovered through an MRI that she has tumors. Her path has now led us to begin chemo treatment to help manage tumor growth and reduce potential future risks associated with NF. Unfortunately, there is currently no cure for NF, and there is no way to predict how mild or severe this condition may become. All we know is that it can progress and become more challenging over time. This is something no child should have to go through—and yet, through it all, Emilia continues to show incredible strength, courage, resilience, and a light that inspires us every single day.

This walk is deeply personal for our family. It’s about fighting for Emilia’s future while also standing alongside so many other individuals and families navigating life with NF. The funds raised will support the mission of NF Northeast—advancing cutting-edge research, providing patient support, and strengthening advocacy efforts, all while bringing hope and help to individuals and families impacted by NF.

If you would like to support Emilia and this mission, we invite you to donate and/or join our team, Miles for Emi. No donation is too small—every single contribution makes a meaningful impact and brings us one step closer! Whether you walk beside us or support from afar, your support truly means the world to our family.

Every step we take is for Emilia and for others living with NF—steps that bring us closer to hope, to answers, to progress, and ultimately, a cure.

Thank you for walking with us, for supporting Emilia, and for being part of her journey with Miles for Emi.