Philanthropic CSUN student organizes online fundraiser inspired by her birthmarks
On a regular school day, walking around campus, Kelcie Berge blends in, unnoticed by the massively populated student campus that is Cal State Northridge.
She goes to class, sits with the rest of her language pathology colleagues and goes on about her day, never to be perceived as “different,” unlike so many others.
When not in school, when not hiding her true colors beneath a thick layer of makeup, Berge reveals the mark that, unfortunately for many, is the cause of discrimination and bullying.
Kelcie Berge is a 23-year-old student at CSUN, majoring in speech language pathology. Berge suffers from Sturge-Weber syndrome.
Around the age of 2, Berge was diagnosed with the Sturge-Weber syndrome, which according to the Sturge-Weber Foundation is a congenital and non-hereditary disorder, and has no known incidence or cause.
The most common symptom is the appearance of Port Wine Stains, or red-colored birthmarks on either the face or the torso of the person. Because these skin conditions are so rare, there is a scarcity of treatments.
Some, however, can be treated. Such is the case with Berge, who has been receiving laser treatment since she was a child. The stains are usually never permanently removed, but are lightened.
“It takes a lot out of you. Imagine having a really bad sunburn beyond the kind that’s going to peel that it hurts and gives you fever that’s how it feels recovering from it,” Berge said.
Basia Joyce is the executive assistant at the Vascular Birthmark Foundation (VBF) and has been working there for about seven years. Joyce also works for the New York State Department of Health, in the Bureau of Immunization.
“Nobody knows how. It’s just something that happens, and parents should not be ashamed,” Joyce said.
The foundation focuses on networking children and adults who suffer with vascular conditions with doctors and treatment centers.
A vascular condition is considered a birthmark or vascular malformation of the skin that can lead to emotional, psychological and physical complications. Some of these are Hemangioma, Arterio-Venous malformation, Lymphatic malformation and Sturge-Webber syndrome.
In 2013, the Martin C. Nimh Jr. Scholarship was presented by the VBF for students with vascular birthmark conditions to apply. In order to qualify, the applicant had to be a college student.
Days later, Berge was awarded $1,000 to help her pay for tuition and books.
Berge has recently begun a fundraiser for the foundation, as one of the requirements for getting awarded is to raise both awareness and funds to aid researchers and treatment clinics.
For over a week, Berge began her online fundraising campaign, where all donations will go directly to the foundation.
At the moment, Berge has been successful in raising more than $500, which has doubled her initial goal.
During the first three days that the fundraiser went online, she was able to reach her goal of $250. She doubled it, and now that she’s gotten closer, she’s tripled it.
“I’ve used social media to get the word out,” said Berge, who used the college contemporary ambience to her benefit. “Because it’s online, it’s a lot easier and I think people feel more secure.”
This is the first time that the organization works with college students in order to raise awareness. Although Joyce says that it’s difficult to get the college campus community engaged, she believes it will be successful.
“It will bring awareness and acceptance in the younger generation to people who might look different,” Joyce said. “Kelcie was really enthusiastic about doing this and come up with this all on her own.”
The Vascular Birthmark Foundation was founded 20 years ago when Dr. Linda Rozell-Shannon found out her daughter had Hemangioma. Due to the unavailability of treatments, she began this network.
“We don’t get government funding. There’s just a few corporate sponsors, big fundraisers and small family-based fundraisers,” said Joyce, who assured that the two fundraising options are the most effective in raising money.
Berge’s parents went to the foundation right when it first began and have been active members ever since. Berge didn’t become more active until she was close to graduating high school.
“Since the treatments began, I became a part of it because of my parents. It wasn’t until I started college that I truly became a part of it,” said Berge, when referring to her commitment to the foundation.
Berge grew up attending a private Christian school for her K-12 education and never really experienced massive displays of bullying due to her conditions.
Nonetheless, she knows it’s existent.
“Sometimes, when people do stare, I just want to say ‘what are you looking at me for?’ I walk and talk and do everything, just like you,” Berge said.
Doctors have never known how to treat her condition and it’s still something she fights to make possible, as her main struggle is not her birthmark, but the malfunction of her eyesight.
In total she has had 13 eye surgeries to alleviate glaucoma caused by her condition. Glaucoma, a condition resulting in optic nerve damage, can cause the eye to lose control of the liquid pressure within it, according to glaucoma.com.
Both her eyes have had complications. Recently, Berge had a shunt implanted in her left eye. The shunt is an implant inserted behind the eye that allows the fluid to flow more easily.
“Sometimes I’ll go days without being able to see on one eye. It’s just frustrating because I know I have to depend on someone else,” Berge said. “I want people to understand that we all look different. So what? You have to get to know the person and not the condition.”
Unlike some of her friends, Berge isn’t shy about explaining her condition to others.
Although Berge has raised her goal amount, she says she probably won’t close it this week.
February 28 is considered Rare Disease Awareness Day. The European Rare Disease Organization chose to recognize the day in 2008. One year later, the National Organization for Rare Disorders became their partners.
“It’s very hard to get people together on these days, so there are usually community events planned throughout the country,” Berge said.
Also coming up is Rare Disease Awareness Month, which is celebrated throughout the month of May. The VBF has chosen May 15 to be their international day of awareness to coincide with the month.
Although Berge claims that the month for the fundraiser to take place was intentional, the day itself wasn’t.
“I had originally thought about starting it on Valentine’s Day, you know, for love,” Berge said. “But, it worked out for me and it gets a lot more people interested. My whole goal was to raise awareness and I’ve managed to do that but I’ll keep on going.”
To donate to VBF, go to Berge’s “Go Fund Me” page.