My name is Eleanor and my daughter was just diagnosed with NF. We noticed her beautiful little “birthmarks” when she was born and her daddy took such pride because his little girl had the same marks as he did in almost the exact places.
She later developed freckles on her armpits and I would tease her that the freckle fairy must have slipped off her nose and landed there instead dropping her bag full of freckles.
Just this week during a check up for a mole on my son, the dermatologist noticed the cafe au lait spots and turned his attention to my daughter. You can imagine my surprise. These were after all JUST freckles. Unfortunately, the doctor did not break the news very well. I was reeling.
It has been 4 days since we got the news and I have had every emotion imaginable. Every fear…how will she be treated? will people reject her?…how will she deal with it? Is this painful? no grandchildren?
I saw many websites but one that kept calling my attention…was you with your shirts…I loved it. I absolutely loved it! I thought about times when I have passed someone in a store who may have had NF1 and I didn’t know if I should look them in the eye, or smile because I didn’t want them to think I was staring. When I saw your shirts, I felt like you were still in control and that gave me such peace. I know you must have many moments when this is difficult or people reactions are hurtful, but I thank you for being that vehicle of hope and inspiration for others.
We just moved. I imagine we will be visiting Texas Children’s or other hospitals in your area, maybe we will meet some day. Until then I hope this email finds you well and in good spirits. Please know that you are making a difference in the world.
Proud parent of child with NF
P.S. Sam is having an MRI and eye check up next week. Please remember us.