Long enough for her to see a photo of a baby born with the same rare condition as hers flash on the screen.
When you have a rare condition, the people who share it make up a small enough network that you tend to know one another by name. That is the case with the community that has formed around ichthyosis, a genetic condition that affects skin growth. Families talk across state lines and international borders. They support one another and they stand up for one another.
Netflix did not provide a comment to The Washington Post. On Saturday, a source close to the film said the producer has addressed the images in questions and replaced them. A new version of the film is expected to be available through Netflix in three or four days. The film’s producer, Sri Venkateshwara Cine Chitra LLP, said in a statement provided to The Post: “We’re deeply sorry for the images that we used in Gandeevadhari Arjuna. We have now edited the film and replaced the images.
She shares photos of her daughter on social media to raise awareness of the condition, but that also makes her family vulnerable. Vulnerable to those photos being misused and vulnerable to hate. She had to stop using one social media platform because the vitriol grew too unbearable.Wilklow-Riley said people leave those comments and then go on with their days, not knowing what her daughter has to go through. She has to bathe three hours each day and keep her body covered in Aquaphor at all times.
That mother, Angeline Hartmann, said her family moved to a D.C. suburb when her son was 3 because they wanted him to grow up in a smaller community where people could get to know him. With that goal in mind, every year before school started, she sent a letter to his classmates’ parents. In it, she told them his condition was not contagious. She also shared with them his favorite color, toys and snacks.Those details humanized him. That movie scene dehumanized children like him.
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