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Stories of NF: Evelyn W

By July 18, 2023January 29th, 2024Awareness, NF1, Story of NF

Evelyn was first diagnosed with NF1 when she was around nine months old. At her six month check-up, I asked her pediatrician about the birth marks I had been noticing. The doctor counted and measured her cafe-au-lait spots and asked if I had ever heard of NF1. I remember her telling me specifically “do not google it” and it was the first thing I did when I got back into my car. I cried for days and worried about the future. We were referred to a neurologist and we have been seeing her every three months since she was a baby (she’s five now). I connected with other families that had NF1 or NF2 through a network of friends (“I know someone with a child, I’ll put you in touch.”) This really helped ease my worries during those first few months.

It creates a lot of anxiety for me as her mother. I worry about each doctors appointment we go to and when there will be a change. She currently has optic gliomas that have luckily been steady. Evelyn receives OT and PT for delays but has been thriving and doing really well. She doesn’t seem to be impacted at this point by NF aside from the fact she does not like going to the appointments. Lately she has been saying when she grows up she wants to be a “mommy” and it breaks my heart to think about the decisions she will have to make when that time comes for her.

Listening to others say they won’t let NF hold them back has helped shape how I feel about Evelyn’s diagnosis. I don’t want her to feel different or that she cannot accomplish great things in life. Evelyn is a kind, loving, and spiriting five year old. She enjoys doing tap and ballet on the weekends. She loves to play with her babies and run around outside. She has an older brother and sister whom she adores. She is very close with her sister and they love to have “sleepovers” every weekend in each others rooms. She’s very intelligent and loves to learn. She’s constantly trying to keep up with her siblings and recognizing letters and sight words. She is looking forward to starting kindergarten in the fall!

Favorite Song
“Up Down” by Morgan Wallen

Favorite Food

Fun Fact
I like to do ballet!