This story and photos were submitted through the 2025 I Know A FighterPhoto Contest, our annual campaign celebrating the strength, resilience, and everyday bravery of individuals living with all forms of NF.
This story and photos were submitted through the 2025 "I Know A Fighter" Photo Contest, our annual campaign celebrating the strength, resilience, and everyday bravery of individuals living with all forms of NF.
Aria was two months old when she was diagnosed with NF. She goes to the children's hospital every six months to see her NF team of a neurologist, ophthalmologist, optometrist, geneticist, cardiologist, ENT, dermatologist, etc ... To cure NF.
Although the news was hard to hear, it was good to finally have a name to attribute to what was going on, and we became part of a family that we never asked to belong to, but the NF community was very supportive.
The conversation delves into the complexities of NF, the power of cross-sector collaboration, and how CTF's strategic model can inspire and inform the work of other organizations.
It has been difficult for me to read and understand, so I listened to lots of audiobooks ...I remember telling some people quickly that I have tumors and have NF, to look it up as to what it is.
At six months old, I again brought it up to her pediatrician that her progress was not where it should be for all of the services and support she was receiving ... As of now, we have not had any NF-related setbacks aside from her gross motor delay.