A man with a rare syndrome that affects his facial structure reveals himself on Reddit and gets support from the community.
When Matt, a resort chef from Tucson, Arizona, visited his doctor’s office last year, he noticed a child in the waiting room who was born with a severe facial deformity.
Matt knew the name of the syndrome: Treacher Collins Syndrome, a rare hereditary condition that affects facial bone structure. When he saw the child, he began to cry.
“I saw the harshness of my life projected onto him,” Matt wrote. “I just couldn’t hold back my tears.”
That’s because, 22 years ago, Matt was also born with Treacher Collins Syndrome. He has no cheekbones, causing his face to slope downwards and his eyes to droop; he has no outer or middle ears; two of his ribs are now in his head, put there by plastic surgeons to give his face structure.
Prior to that moment in the doctor’s office, Matt had never seen another person, much less a child, who also suffered from the syndrome.
Matt, who asked to remain anonymous out of concerns for his privacy, revealed this, and much more, over the weekend in a question and answer session on Reddit. The event took place in the site’s IAmA (“I am a”) section, where ordinary and extraordinary people frequently ask redditors to AMA (“ask me anything”).
The section sees hundreds of IAmAs a week. But Matt’s fearlessly honest answers showed the social news site and the section at its best: unusual, intimate, and enlightening.
As expected in such an open-ended question and answer session, topics swung about wildly, from his plans for the future (studying psychology, Matt said), to his advice for other children with facial deformities, to specifics of his day-to-day life (“Are you able to communicate effectively?” asked one redditor. “I can speak. I’d equate it to having a very thick accent, hard to understand at times but manageable,” Matt replied).
The thread even drew the attention of Mike Mitchell, a Los Angeles artist most famous for a painting of Conan O’Brien that became the official image of the late night star’s website and tour last year.
Mitchell swept into the thread, announced he was going to paint a portrait of Matt, (“I have never randomly painted someone,” Mitchell wrote “but I found your AMA extremely awesome and inspiring”), and within hours delivered (see the painting here).
“That portrait was amazing,” Matt wrote, adding that he intended to print it out and hang it on his wall. “I was blown away.”
But despite the thousands of comments and the one artistic guest appearance, the thread eventually settled on a theme.
Matt revealed that, while in high school, he had contemplated suicide. That was until he realized that he “wasn’t alone” in his pain.
“And pretty soon I was able to let all that pain and anger go,” Matt wrote.
As he began to enjoy the benefits of accepting his condition and himself, he realized that public attention wasn’t necessarily a bad thing. And that’s why he did the IAmA.
“I just found myself in a place where I was completely comfortable doing something like this,” Matt wrote in an email to the Daily Dot. “And I know my life and experiences could not only educate people but maybe make people just a bit kinder.”
And that mission — to make people “just a bit kinder” — was inspired in part from seeing that child in the doctor’s office over a year ago.
“It really made me realize that, by being out there, I’m not only doing myself a favor,” Matt wrote, “but making things better for everyone.”
Pure, uncut internet. Straight to your inbox.