In her short life, Cristina Perez was known to the world as many things: ambitious young woman, daughter, sister, friend, poet, lover of reality TV shows, dancer, Web site designer, dreamer and animal lover.

To many North County Times readers, she was also known as the "Butterfly Girl," a courageous fighter of a rare and brutal skin disease called epidermolysis bullosa (EB), characterized by the presence of extremely fragile skin that gradually is stripped away from the body, producing recurrent blisters inside and outside the body.

It was a disease which had failed to damper the vibrant spirit of Perez time and time again, said her mother, Cindi Hofer.

It was a disease that took her life Sunday at the age of 24.

"She wanted to be stronger than EB," Hofer said. "She never wanted to give up. She was determined to do all she could to stay alive and beat the disease."

About 100,000 people around the world are born with the incurable genetic disease annually.

From the day Perez was born, both her and her mother were on a mission to find a cure that would rid their lives of the ravaging disease.

The two, living in San Marcos, had traveled the globe together and endured a number of trial and error treatments by numerous doctors, which always led them back to square one. The two had also leaned on one another to maintain a positive outlook despite their numerous disappointments.

"I called her my little Mother Teresa," said Hofer. "She brightened my day no matter how gloomy it would get."

Although she had spent all of her life bandaged, Perez had never let her physical ailments keep her from unleashing her inner free spirit, said fellow EB survivor and friend Jamie Hartley.

"She was inspiring to me, she was always filled with ideas," Hartley said. "I will miss her giggles and the way she beautified the world around her and shared it with others."

In the little time she had, Perez had launched her own Web site titled "Through the Eyes of a Patient" fully committed to raising awareness for EB.

Among other things, she spent countless hours writing poetry and investing in her online store "EB Home and Health," which catered to those afflicted with the disease by offering them homeopathic products and other forms of alternative medicine.

"She had advanced the EB community so much because she cared about it deeply," Hofer said. "She hated being sick because she felt that she wasn't contributing to society, she felt every day she needed to contribute something to the world."

Perez had also spent years reaching out to other EB patients as far away as the United Kingdom and Australia, creating a long list of friends who counted on her for support in their own daily struggles.

Hofer said recently that her daughter had even begun to write letters to several countries to urge them to stop the reported euthanizing of infants born with EB.

"She wanted to express her opinions and let them know her life was filled with joy regardless of her daily pain," said Hofer. "She felt everyone deserved a chance to live."

Perez's mission even recently caught the attention of Hollywood stars and EB activists Courtney Cox and David Arquette. A week ago, Arquette had granted Perez one of her last wishes by helping her publish a compilation of her poems in a book, said Hofer.

"It was one of the happiest days of her life," Hofer said. "Every person she met, she has affected their life in one way or another."

On her Web site, Perez recently confessed, "EB keeps me from doing a lot of things, but I don't let it keep me from at least trying. I have lots of goals and dreams for the future."

Even in the last hour of her life in a Palomar Medical Center bed, Hofer said Perez had clung on to her optimism.

"She fought so hard in the end," said Hofer. "She said she had unfinished business to complete. In her heart and in her mind she felt it just wasn't her time."

An open funeral will be held at 2 p.m. Sunday, Oct. 14, at El Camino Memorial Park Chapel, 5600 Carroll Canyon Road in San Diego.

On the Net:

• http://www.nctimes.com/special_reports/cristina/

• http://www.ebpatient.com