Laylani was diagnosed with NF2 on October 19, 2017. At just six years old her entire life changed, as a whole our entire life changed. Laylani showed symptoms since the age of two and the specialist we were seeing at the time told us she was just “mocking” her dad because he too is an NF warrior. Laylani, at just six years old, did not understand why she had to get this MRI and other testing, she didn’t understand what was really going on and why she was in the hospital or what surgery was.
Living with NF impacts Laylani’s life because there are things she would love to do but because of her condition she isn’t able to. For example, Laylani loves dancing and cheering and because of her issues she is limited to doing what she likes. I’ve taught Laylani not to let anything stop her from having a future and becoming whatever she wants to be.
Laylani is currently finishing 6th grade of her middle school year. What makes Laylani happy is making friends that accept her, spending time with her family, playing Roblox and listening to music and dancing.
There hasn’t defining moment in Laylani’s NF journey but more of a question, “why is your smile uneven?”. Having to explain to people over and over why she does not have a perfect smile is extremely frustrated to Laylani. As her parents we had to explain to Laylani that not everyone understands NF and that it’s something not everyone is familiar with.
Favorite Arist
Toosii
Dream Superpower
If I could have any super power it will be to help my dad hear again.
Favorite Food
Pizza
Fun Fact
I’m obsessed with Dunkin Donuts and Starbucks ice lattes.
