An American woman is waging a battle to rid the internet of an image mocking her son’s medical condition.
Alice-Ann Meyer says Jameson was born four years ago with Pfeiffer syndrome. It’s a rare, genetic disorder that is characterized by a premature fusion of skull bones. The disorder manifests itself in different ways but those affected commonly have difficulties eating, breathing, seeing and hearing.
The condition affects one in 100,000 people.
Shortly after Jameson was born, Meyer started the blog Jameson’s Journey to document the family’s experience with the syndrome and to help educate people on how to cope with the difficulties of the disorder.
In a September 2014 entry, Meyer posted a picture of her smiling son after he had been eating marshmallows on a family camping trip. By February 2015, the photo was picked up and altered and shared on social media, with a punch line comparing Jameson’s face to a pug – a breed of dogs.
Meyer only became aware of the photo last month. Meyer says she was outraged that people would use the image of her son as a joke.
“As I read comments on these posts I realized how much ignorance is out there about craniosynostosis and the various syndromes that can be associated with it,” she wrote in a blog post on Jan. 31. “So, I wanted to clear a few things up.”
“These conditions are not due to something the parent did or did not do during their pregnancy. These are almost always random genetic mutations. Meaning, there isn’t anything that can increase or reduce your chances of having a child with Pfeiffer syndrome.”
She fought to remove the image with support and encouragement from her followers.
“To those of you out there that still have this meme posted know that a sleeping giant has awoken,” Meyer wrote. “You have poked the bear. You may not yet be familiar with the cranio-community, but you will. There is an army of cranio-warriors fighting for Jameson and all the other kids out there.”
Meyer contacted several social media sites imploring them to remove the image of her son.
Twitter and Instagram blocked the image quickly. Meyer says Facebook was slower to act.
“Seriously your reporting platform is crap,” Meyer wrote in a blog post. “How is it that you report something and ‘it doesn’t violate community standards,’ then all of a sudden 48 hours later it does? How many shares or downloads happen in that time frame?”
In a blog post on Saturday, Meyer thanked her supporters and the media for covering the story.
She says she is motivated and has plans to raise further awareness of Pfeiffer syndrome in the near future.
Comments