I received a text message from my brother at 3:42 AM Saturday morning asking if I knew what Reddit was. I laughed and said “of course I do.” (Please, what Internet-obsessed kid doesn’t know about Reddit?)
He didn’t even have to reply explaining why he asked because the reason was obvious as soon as I went to the Reddit home page. He wrote an IamA, and it had received over 2,000 upvotes. Not only that, but it was right on the front page of Reddit.
For those unfamiliar to the Reddit community, an “AMA” (Ask Me Anything) is a chance for people with unusual lives to share their stories. Users of the site, called Redditors, can either upvote or downvote a post, which influences the post on the home page of Reddit. People who write these types of posts must provide evidence that their story is legitimate.
My brother Joey posted pictures to prove that his story was legitimate to skeptics and people unfamiliar with the disease. He was born with a rare disorder called FOP, which was misdiagnosed as cancer when he was young. Fibrodysplasia Ossificans Progressiva is “one of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.” He currently has severe scoliosis, severe hearing loss, arms he cannot extend, a neck he can barely turn, and recently lost the ability to walk.
A million questions popped into my head when I heard the news. I didn’t know he used Reddit, so it came as a total shock when he wrote one of the most popular posts on that day. I later called him to ask what it was like to share a personal story and have it be so widely received.
“I came up with the idea on my own. I decided to just see what would happen. I did no promoting. Just told my story and tried to reply to everyone,” Suchanek explained. By 4 AM, people had already taken notice and left hundreds of comments, filled with questions. “How are you even typing this?!” was a common question he received. Others asked if he had ever thought about dying before he could graduate college. The 20 year old Marist College sophomore replied that he was optimistic to graduate.
“You always hear stories of how random people help people in need by just sharing their story,” Suchanek explained. “I thought I could try that too and it worked really well.” And it did. Within 24 hours, Suchanek raised $2,400 dollars on a Fund.ly page his friends from Marist College put together. ”I was not expecting this turnout. I got comments within minutes and raised thousands of dollars in 24 hours, mostly thanks to the Reddit family.”
I continued to ask him why he thought the post was so popular. “I took the time to comment and respond to their specific questions,” he said. People were curious, and he “knew what he was getting into.”
I also addressed the skeptics who asked depressing and even offensive questions. However, my brother quickly switched to the positives. “[I received] mostly positive feedback. There was the occasional ‘Why I should donate to it since its so rare and you are a fake?’ Then there were people who were just rude. It’s the Internet. I love all the support I got. They all touched me in some way, but I also really touched people and that what made the experience so wonderful.”
Suchanek hopes to keep spreading awareness of FOP while on medical leave from Marist College. For him, this is one small step into creating an revolution within the FOP family. “I am on the Internet, but I don’t see it as a really big deal. I will know when it is a big deal when people see me on my street and know me either through Reddit or my campaign to Stop FOP.”
He concluded by saying that he “raised money by just telling my story and I think that is pretty awesome.”
Suchanek has taken advantage of Internet communities to share his story, raise money, and create social media campaigns all while being stuck in bed for months. He created a voice for himself without leaving his home or his bed. He has touched others, satisfied curious minds, and created something to keep him involved with communities he was once physically part of. The power of the Internet allows him to finally speak and share what was once simply a family struggle. Now, the whole world can help him through this tough time.
In order to find more about FOP, you can check out the FOP website. Suchanek’s Facebook campaign for Stopping FOP can be found here as well as his Twitter page. You can donate money to the cause here.