Christie Hoos’ 10-year-old daughter is fighting for her life. Currently in her 8th month of chemotherapy, she will have 19 more to go before her treatment is complete. But that isn’t the only struggle she faces. Rebecca Hoos has Down Syndrome.
If having a special needs child, and supporting her through a cancer fight wasn’t enough for this family of 6, they recently found out that a Swiss bio-medical company named Genoma used Rebecca’s image for a Prenatal Genetic Screening Ad that was hung outside a medical event in Madrid, and posted on their website.
On her blog, So Here’s Us, Christie often writes about her family. She shares ‘anecdotes and opinions, stories of their busy life for a small, but encouraging group of readers’. She never refers to her children by name, and rarely post pictures of them. But somehow, a photo she shared was stolen and illegally uploaded to a stock photo site where it was used to advocate against the very genetic disorder that the family embraces their little girl for having.
“Tough and sweet and feisty,” Christie writes, proudly describing her daughter. “and a thousand unique qualities all her own. She is the joy of our life.”
The company says the image mix up was unintentional. They downloaded the photo from a stock site, who stole it, and they believed that legally they had the right to use it. In a statement on Genoma’s site, CEO Frederic Amar, said the poster displayed at the medical event of Rebecca was meant to convey a message of ‘life and vitality’.
The Hoos didn’t see it that way. Christie wrote:
“This heartless company that used my daughter’s photo without our consent, or that of our photographer. Legally a copyright infringement, but also breaking what is referred to in copyright law as “moral law” since her image was used in a derogatory fashion. They insulted and abused my innocent child in their pursuit of profit. They broke faith with common human decency. And the world is watching.
What’s worse (for them), they angered this Mama Bear.”
The couple sent the company a letter demanding they stop displaying the poster, which the company complied with.
“Genoma has removed our daughters photograph from their website. They’ve indicated a desire to apologize. While I do not believe their actions were intentionally malicious, in my opinion what happened was unethical and illegal. ”
They were also able to have the stock photo site taken down, which is a win for anyone else whose photos may have been stolen and sold without regard.
“Prenatal testing will always be a hot-button topic for parents like us, ” Christie explains. “Let’s be honest, with a 90-95% termination rate parental preparedness is not the primary goal of these tests. I find it morally reprehensible.”
In this digital age we often share our favorite family moments forgetting that others with bad intentions are sometimes waiting to use those photos for their person gain or agenda.
Our hope is that this family is able to put this behind them so they can give their daughter the support she needs to fight for her life.
From the comments on her site they have a strong army of supporters who went to bat for them overseas rallying various groups for support to get the images removed.
Christie tweeted her appreciation,
“We are overwhelmed by hurt and anger, but also appreciation for support from all over the world – especially Spain. Thank you! Gracias!”