My friend thought it was Brenna and was extremely upset by it. Thank God it wasn't Brenna's photo...but it could have been. Most Harlequin babies look very similar at birth, and a number of other people also thought it was Brenna's photo, as evidenced by some of the comments, who were pointing people to Brenna's Facebook page. The photo was actually taken from the Harlequin page of FIRST's website (Foundation for Ichthyosis and Related Skin Types), and I'm still not sure who exactly the photo is of, but that doesn't matter.
The comments are unbearable to read, but it is proof that so much ignorance is out there when it comes to rare diseases and rare conditions...and difference in general.
I've dealt firsthand with ignorant people making cruel comments about Brenna's photo, and those comments were nothing compared to what people are saying about this child's picture. It's sickening not only that someone would post this photo - without permission obviously - with no motive to educate about the disease itself but rather only to gain attention....but also that people would feel the need to write hateful and cruel comments about a baby who is sick and suffering.
I've seen this done with many other photos prior to this one, and I cringe every time I see negative comments ... we need to remember that these are real people. These are real babies, real children, who have parents and family and friends who love them very much. It is absolutely deplorable that the photos of these precious children are being misused and exploited.
I was very proud of DeDe's response to the situation. She created her own photo with her son Evan's pictures in order to combat the ignorance, to educate. (She was very angry as she was making it, hence some little errors...)
Brenna is my daughter, and I am proud of her. I think she is beautiful, and I am proud of her baby photos, and I should be able to share them just as any mother shares photos on social media of her baby without having to worry about someone using them inappropriately for the shock value. My child was created by God just as she is, and we love her very much.
Social media outlets can be a fantastic platform to share news, connect with friends, and much more. Because of Facebook and blogging, so many more people have learned about ichthyosis, and we greatly appreciate that sharing Brenna's story has led to awareness and acceptance. But it can be very negative when information or images are used inappropriately like this. How can we combat this? Education. Educate yourself. Educate others.
Liking a photo on Facebook does nothing. If you want to truly help a child with a rare disease or cancer or a mental illness, do something. Learn more about it, educate others and donate to a cause (like FIRST, which helps families affected by ichthyosis, raises awareness and funds research for children like Brenna.) While they may just show up in your newsfeed on Facebook as strangers whom you will never meet, these are real people, real families, who are living with these conditions. They are our family, it is our daughter. Fight the ignorance, and do something more.