Written by Leslie Wheeler
ORLANDO Fla., — Imagine your body feeling very weak, just out of nowhere, and your vision is half as clear as it is now. You’re trying to learn something as simple as the alphabet in class, but nothing seems to stick. No matter how much you focus, it doesn’t get easier, and your mind begins to fill with frustration. Then, all of a sudden, your body just bursts out into convulsions.
“That’s what it can be like,” said Crystal Coba, 20-year-old business major at the University of Central Florida.
Coba is referring to a day in the life of 3-year-old Keerthana, who is currently suffering from Sturge-Weber syndrome (SWS).
According to Anne Howard, director of patient and family services at the SturgeWeber Foundation in New Jersey, SWS is a disorder of the body’s nervous system and completely unpredictable.
The disease is not inheritable and there are fewer than 200,000 reported cases in the U.S.
“They feel complete isolation,” Howard said, referring to anyone affected by SWS. “They think nobody else has ever gone through this.”
Although researchers found a gene in May that can cause SWS, the cure for this disorder is still unknown.
The gene recently discovered is called GNAQ and is a somatic mutation, which means something goes wrong with the gene after conception.
“It doesn’t mean we can do anything about it now,” Howard said.
Thousands of non-profit organizations around the world believe that until there is a cure for such life-threatening illnesses, their job is to appease the pain of the child andhis or her family through counseling and wish fulfilling.
Coba is a part of the UCF Cornerstone Program, which is partnered with a non profit organization, and said she is working with a team to make little Keerthana’s wish to attend CECO (Conductive Education Center of Orlando) for summer camp come true. The team must raise at least $1,000 by July 12 to fulfill her wish.
Rosie Wilder, director of Wishes for Kids, said she has 12 different teams working on 12 different children’s wishes, and this Cornerstone group is working for the Wishes for Kids program within the non profit organization New Hope for Kids.
Coba, along with Nicholas Gebert, Patrick Fenlon, Preston Breder, Bryan Medina and Jordan Smith, must set up her own event and fundraise outside the organization for the class.
Jordan Smith, 20-year-old accounting major at UCF, said his team has only raised $400 so far.
The team’s first event was Thursday at the Gator’s Dockside on Lake Underhill Road and Alafaya Trail. Smith said they are still waiting to see how much money they made from the event.
They have two other fundraising events scheduled for June.
The next event for their team is Sunday at the Phi Delta Theta house at 3600 Khayyam Ave. across from the UCF campus. The event will be a car wash, Smith said, and they will be selling Jeremiah’s Italian Ice.
The following event will be on June 11 at Sweet by Good Golly Miss Holly, a cupcake shop at 711 N. Alafaya Trail, from 10 a.m. to 10 p.m., and 15 percent of the proceeds from the customers they bring in will be donated toward reaching their fundraising goal.
