using celebrity and creativity for awareness.

i had never heard of apert syndrome before lights posted a picture of her niece, fern, on instagram a year and a half ago. it's a chromosomal anomaly where bones grow at different rates and cause different physical abnormalities like fused fingers and toes and a distorted skull shape. she posted this picture holding her, saying she knows life will be harder for her because of her syndrome. 

she also went on to say that it was a wake up call for all the times she had judged someone because of the way they look. she encouraged her followers to "check yourself" the next time you find yourself judging someone based on their appearance. 

a few weeks later she posted a picture on facebook (yeah, i'm a huge creep and follow her on multiple social media sites, she's great, shut up) holding baby fern right after the little girl had finger reconstruction surgery. lights said she would never take her hands for granted again. 

then just today lights posted a link to a free download to a book she created for her niece saying: 

over the holidays i made my little toddler niece, fern, who was born with rare apert syndrome, a book about a little girl with apert. i wanted her to have some reading material that featured a person with four digit hands, surgery scars, a hearing aid and ortho boots (to name a few of the things she will be raised dealing with) because there are pretty much no books she can relate to on that level. if any little one you know has apert syndrome, pass it on to their fam. download link below to a digital copy (i had one printed through iPhoto and it looks real cute).  -lights

so how is that for her just being a fantastic human being? i'm sure she recognizes that families who have kids with apert are probably stretched financially and may not be able to afford the book so she's just giving it away so those kids don't feel so lonely in a world that can be quite cruel. if you know someone with apert or just want to download the book yourself you can find it here. 

i am going to venture a guess that lights will learn just as much or more from little fern than fern will learn from her aunt lights. 

xo