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Stories of NF: Aria

By April 13, 2023January 30th, 2024Awareness, NF2-SWN, Story of NF

Aria was just two months old when we were told by her pediatrician she may have something called NF. We went to the children’s hospital to see a geneticist to confirm the diagnoses.

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. But she never lets it stop her from doing anything. As Aria grows up she understands it so much more. Her defining moment was when she realized she’s not alone and there are thousands of kids and families just like hers. They now have monthly zoom calls to discuss everything going on in their life.

Aria is a nine-year-old sweet, cheerful, and energetic kid who loves to inform everyone she talks to about NF. She has seizures due to her NF and recently had to undergo many different tests to see how it’s affected her brain. She is going for surgery in a few months, and instead of being upset, she is trying to get as involved as possible with CTF. Recently she took up candle-and-soap-making in hopes to sell products to help find a cure for NF. Everything she does she puts her heart and soul into. She does Kenpo and is currently a yellow belt, and very proud of it. Her hopes are to be so much more involved with fundraising and to help find a cure for NF. She is the true definition of strength and perseverance. Aria is such an amazing girl who I could not be more proud of.

Favorite Song
Arms Open by The Script (Aria and mom’s song)

Dream Superpower
The ability to cure NF

Favorite Food

Fun Fact
Aria is an artist