Are You Unknowingly Exploiting Kids with Rare Disease?

Imagine, three to 10 months with your new born baby in a Neonatal Intensive Care Unit (NICU) born with a potentially mortal disease or defect. You’ve battled through surgeries, recoveries, medicines, codes (where the baby’s heart/breathing stops). You’ve watched bags of blood be hung, feeding stopped and started, lines placed and replaced, ventilator settings and masks changed, tubes and wires everywhere making holding complicated, clothing complicated, pictures complicated.

Everything that should be second nature as a parent, is bionic and verging on life and death. You’ve spent holidays in the hospital, come to know the cafeteria and cleaning staff, have bonded with nurses. Your friends post pictures of their children in strollers, cribs, playing on the floor, reaching for their toes, and your child is struggling to learn how to breath, eat, just live. All you can do is follow the lead of your child and the medical team and hope, pray and believe that you’ll come through the other side. And if you’re brave enough, you start to share your story, hoping that somehow this will make a difference, for someone else’s child in a same situation. Or maybe even encourage others to care, to donate to help prevent things like this happening.

You share precious pictures of your child covered in lines, in vulnerable conditions post surgery looking pale and struggling to breath on a vent, maybe their body is bruised from where they have had the team working on them after their heart or lungs stopped.

You share to open eyes, or to bring distant friends and family into the hospital where some cannot be. You drift from being scared to struggling with why any of this is happening at all, sharing provides some small validation that you’re doing your part for your child.

Then, one day, maybe years later after you posted that picture of your child in a hospital room, or home with lines, tubes and wires, you see a familiar face pop up under the title:

“This baby needs your prayers, Like for a prayer, Share for Amen.”

It is your precious baby, on some stranger’s page, now three to four years after that picture was taken.

Some stranger has taken a picture of your child in a vulnerable and compromised state and is using it to “farm” likes, shares and followers on Facebook. People have now posted 100+ “prayers” and “amens” and shared the post all over the world.

But the person who has stolen the picture does not even know your child’s name.

Much worse, sometimes they’ve given your child a new name, even a new diagnosis- now they have a heart transplant when your child was a gastrointestinal patient, or they’ve stated “no one has prayed for this child,” or “no one cared for this baby,” or “is this child beautiful?” Some stranger has used your most vulnerable time as a parent and remade it to suit their own purposes. And there are masses of people typing “amen” or “prayers sent” in the comments with no thought or care as to what is really going on.

This is Facebook farming. An incredible low and unethical weak point for Facebook and its users. What happens is that pages, posing to be people or groups, steal pictures from parents and patients, post them and ask followers to “like and share” for “prayer” or “support.” This then gets them more followers and garners the attention of online ad companies that then approach the page to pay for spots.

A “like and share” is pretending to be in support of a child you do not know and is actually harming the child and providing profit to these scam artists. Facebook is allowing scam artists to use the public to violate a minor’s privacy and a minor’s medical information without permission and under false pretenses. Facebook has not taken a meaningful stance on this issue, that has been on-going for four years and affected thousands of innocent and vulnerable families and children. Despite the public having had numerous articles and TV spots on the issues, by and large many seem unaware of the problem and continue to perpetuate it by sharing these posts.

Yet the truth remains: Facebook, these “farmers” and those (who may have good intentions) who like, share and type amen are directly hurting thousands of sick children around the world and their families. This practice must stop. The Facebook community must become more aware of this issue and Facebook must tighten up their ethical standards and thwart this problem.

This year alone in the rare disease world, five gastroschisis families have had images of their children stolen and used by these “Farming” sites. The devastation is palpable. These scam artists have made up names; said the babies were not cared for, used the wrong medical conditions, made up surgeries while hundreds of Facebook users have liked, shared and commented “prayers” on the posts. Moms have contacted us in tears, frantic, in shock, horrified that their child’s images were being used falsely for the benefit of someone else.

Some of the images stolen were more than four years old, the child has either now passed or in stable condition, rehashing under false pretenses to the world, some of the most vulnerable and terrifying times of these children and parent’s lives.

The practice MUST be stopped. Facebook users MUST become more aware and better educated, and Facebook MUST take a more proactive and firm stance on this.

Sign the petition in support of stopping Facebook Farming here.

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