It breaks my heart to know that children face this discrimination and exclusion because of their skin. These situations are the reason we need to raise awareness about this rare severe skin condition - to show that it's not contagious and that everyone deserves some pampering.
She and I met in Chicago last year - I miss her and her brothers a lot. You can read her story from last year here.
"HI I’m Aurora I am 9 years old.
I’m going to tell you about my story at the McHenry Nail and Spa.
I was going to get my nails done and I was really excited to go. We went in the store and a high school girl took me to my chair and started to get the water ready. I forgot my nail polish so she picked out a color that I liked.
A lady that worked there came over to start on my nails. She realized my skin looked different and kept bending down to look at my legs and feet. She walked away a few times to talk to other people that worked there. I didn’t understand what the problem was. She came back and said “We no do you today.”
Great Aunt tried to explain it was just dry skin and that I could get a pedicure, but they still didn’t want to give me a pedicure.
I was sad so I got my nails done somewhere else and all they asked was “do you use lots of lotion?” and my mom said “yes” and they did my nails without a problem. I will make sure to go to Unique Nails again since they are super nice.
Plus I was on Youtube but then McHenry Nail and Spa took the two videos down. I didn’t like them putting a video of me on Youtube (and neither did my parents).
I wish people really understood what it is like to live with Ichthyosis."
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