Story of NF: Norah

There were many early signs that we weren't educated enough to know how to put all the pieces together to figure out what it was. A nurse noticed all of Norah's CALs and referred us to dermatology, where we discussed the likelihood of NF or similar diagnoses. It was a lot of information to take in while keeping our emotions on hold.

Living with an NF hero can be challenging, with all the appointments and constantly monitoring her health at home to check for new growth. One thing that will impact our future is that Norah will fully understand her condition. Since she's only five and is globally delayed, she doesn't know why we're always at the doctor's office. She's slowly starting to pick up on how to say NF!

Norah's father and I are split, which makes it a bit more confusing for Norah. Her father has not accepted her diagnosis and wants the family to not treat her any differently because "there is nothing wrong with her." So, I take it upon myself to order resources from the CTF page to help educate him when he's ready.

Norah loves to draw and do her and mommy's makeup. Spending time outdoors makes her happy because there are so many possibilities, like the park or a nature walk!

Favorite Song
Barbie Girl by Aqua

Dream Superpower
To be a mermaid (I really want to be a mermaid)

Favorite Food
Bagels