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'I am furious': Charity mailer offends families affected by cleft palate

TODAY logo TODAY 10/17/2017 Terri Peters

The non-profit organization Smile Train is going viral this week, not for the medical services the charity provides for kids with cleft palates, but for a Halloween-themed mailer which has left many families offended.

"What if every day felt like Halloween?" asks the mailer, which shows images of children with cleft palates along with the statement, "You have the power to put an end to their nightmare."

Kristen Carr, a Texas mother, shared a photo of the mailer on Facebook last week along with her feelings about the campaign.

"I am, quite simply, appalled. I am disappointed, and I am also furious," Carr wrote in the post. "The clear connotation is that, pre-surgery, cleft-affected children are akin to monsters."

"I am not going to waste my time explaining that every single parent of a cleft-affected child falls head over heels in love with their child's original 'wide smile,' Carr continued. 'Instead, I'll just share this post with a group of over 9,000 moms of cleft-affected kids, and they can tell you their stories for themselves."

After Carr shared the post, parents and cleft-affected adults from around the country followed suit.

Jess O'Connell, who lives in Colorado with her husband and their two-year-old, cleft-affected daughter, Olivia, shared Carr's post, expressing how, as the mother of a child with a cleft palate, she was saddened by the mailer.

"The mailer was heartbreaking for me to see," O'Connell told TODAY Parents. "When I found out Olivia had a cleft lip, I was 21 weeks pregnant and I was terrified because of the stigma society has on these children because of images and rhetoric like this."

a group of people sitting around each other © Provided by NBCU News Group, a division of NBCUniversal Media LLC

O'Connell says, with 1 in 700 children being born with a cleft palate, it's time for society to be more supportive of cleft-affected people.

"We are socialized to believe cleft lips and cleft palates are scary because we are met with images of mangled mouths and faces," O'Connell continued. "But in reality, cleft lip smiles are so beautiful and I truly miss her first smile. I think all cleft parents would say the same, and I shared (the post) because we can't break the stigma if we keep quiet."

Rashell Sprague is a 32-year-old, cleft-affected adult, living in California with her husband and their three daughters. For Sprague, who has had multiple surgeries to correct her unilateral cleft lip and palate, the mailer left her scratching her head.

"My first thought was, 'Why?' said Sprague. "Why would they even associate Halloween with a child born like this? Monsters are the ones that choose to do awful things to other people — being born like this, we don't have a choice and being described as a monster is an awful feeling."

a group of people sitting in the snow © Provided by NBCU News Group, a division of NBCUniversal Media LLC

Still, Sprague says she understands the thought process behind the campaign.

"The other part of me could understand why they would want the general public to see children like this and to possibly receive more money from those who know nothing about this defect," said Sprague, adding that if an organization like Smile Train lost funding over the incident, it would only hurt children who are born cleft-affected.

According to Susannah Schaefer, chief executive officer of Smile Train, the organization has taken the feedback surrounding the mailer seriously, and hopes to correct their mistakes going forward.

"We are truly sorry that our recent Halloween-themed mailings were offensive and hurtful," Schaefer told TODAY Parents in an email. "It was never our intent to adversely depict the very children that we are dedicated to helping. Our intent was solely to help children with cleft lip and/or palate live healthy and happy lives."


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