For a couple of days, that was it. And on the third day, it all clicked. Paisley began to tell me her story. The fact she was hindered from having a peaceful, happy life because of the restrictions set on her by her parents. Their fear for her health and their strict observation of her relationship with the guy she loved. Paisley has an interview at In the Chair, which explains so much more.
Two clouds, floating ever so slowly through the soft blue sky, one from either direction, moved closer on a path towards collision.Angels, their beautiful song filling the air like a lullaby, sat serenely on separate pillows of softness, gently flapping their enormous wings to deflect the heat of the sun's rays from the cloud's tiny inhabitants.The tiny souls, cuddled within the silken folds, glanced across the gap and in lightening recognition, they reached out. Before their chubby fingers could touch, thunder boomed and puffs from their guardian’s breath blew the clouds apart. Continuing in the same direction, yet inches apart, the angels resumed their soothing tunes.
The reactions of the parents are what really made me do a lot of research. Why were they so hard on her? Beyond the immune deficiency and heart issues Paisley has to deal with, she also had Albinism. The one thing I've truly taken from the research is, this is an ailment where the skin tone can be in every race/ethnicity, which proves racism is ridiculous and yet, people are still treated as an oddity and something to be feared or ignored. A shame.
I have to say, as a youth, I've known of people with the ailment, but didn't know them personally so writing about someone took a lot of study. I always want to get everything down as correctly as possible.So I went to my favorite search spot and dug in. Read many articles, looked at pictures and videos and feel really close to Paisley. Check out the interview we had at IN THE CHAIR.
I found health facts here and here, about the different types of Albinism, what causes it, genetics and so forth. Paisley happens to have Chediak-Higashi syndrome which accounts for her immune problems. is another rare form of albinism that is caused by a defect in the LYST gene.
Read a lot of other articles, mostly on the NOAH site. National Organization for Albinism and Hypopigmentation
If you know someone newly diagnosed, go here.
While on Instagram one day, came across this magazine.Albinism Beauty, features gorgeous models and informative articles, insight, pictures and stories of people living with Albinism. They also have a fundraiser geared to the protecting individuals being terrorized, attacked and murdered for their body parts.
Please , take a look. http://albinismbeautymag.weebly.com/home.html
Enjoy this documentary of two African American brothers, one happens to have, Albinism. It's very interesting and shows some of the interactions they receive from classmates and the general public.
All publications by Ey Wade can be found at these locations. Go out and feed your reader!