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.
This Story of NF was submitted by Lainey's mother, Whitney... We began the conversation on getting tested for NF ... The main struggle was the onset of many appointments and testing ... I am very proud of her ... I was a single mom for most of my life.