The fraternity Kappa Sigma braved the rain Sunday to raise awareness for Stevens Johnson syndrome.
At the center of attention was four-year-old Gracie Bower, a SJS survivor and Fort Collins local. The walk was sponsored in her honor. Kappa Sigma brothers and members of the Stevens Johnson Syndrome Foundation gathered in the main ballroom of the TILT building before doing a 1k walk around campus.
Stevens Johnson Syndrome, while not recognized by many, stems from an extreme allergic reaction to prescription medications and causes the body to break out in severe blistering and swollen eyelids. For Gracie and mother Janelle, the disease was unheard of until they came in direct contact with it.
“My daughter was diagnosed with SJS when she had just turned two-years-old,” Bower said. “It has changed our lives dramatically.”
After having a bad reaction to immunizations, Gracie was put on antibiotics that triggered the disease.
“She started to get what looked to be hives, and then it progressively got worse until she started getting blistering around her eyes and in her mouth. That’s when I found out about SJS,” Bower said.
After getting involved with the SJS Foundation, Janelle reached out to Kappa Sigma member and former president Andrew Finnin in order to put together an event for survivors, including her daughter. Finnin was happy to work with the foundation, but at the time did not realize how his participation would truly affect him or those around him.
“In the last week I found out that two of my own friends are SJS survivors,” Finnin said. “When you have an event like this and your friends come up to you and tell you, ‘hey did you actually know that I’m a survivor?’ it completely makes a personal impact.”
For Nick Allan, one of the two friends Finnin refers to, the event was something he could have never expected when pledging for Kappa Sigma.
Allan, a SJS survivor and sophomore history major, was first diagnosed with the condition in the fourth grade after receiving medication meant to treat pneumonia.
“I was so happy and proud that we were doing this,” Allan said. “It’s so rare almost, but seeing the amount of people that have had it has been eye opening.”
While the event was focused on raising awareness, it turned into somewhat of a community gathering, with SJS survivors traveling across the country to meet one another. According to 26-year-old survivor Nicole Chapman, meeting other survivors was an experience of a lifetime.
Chapman, of Kalamath, Oregon, regularly talked with SJS Foundation founder Jean McCawley of Westminster, CO, but never had the chance to meet her until Sunday.
“When I heard about this walk I convinced my dad to come with me and we bought plane tickets and flew in this morning,” Chapman said.
Chapman walked around the TILT ballroom showing pictures of herself at six-years-old, bandaged from head to toe, suffering from the disease.
“I try to spread awareness as much as possible,” she said. “A lot of people think that it is like the flu. You get it and then it goes away. It doesn’t.”
Every year Chapman has to get surgery due to her condition. However, she stays positive throughout her struggles.
“You just can’t let it get the best of you,” she said.
Collegian Staff Writer Natasha Leadem can be reached at firstname.lastname@example.org.