APTOS – Dave Wardle, in struggling to come to grips with the loss of a beloved daughter to a rare cancer-like disease, thought he could best serve her memory by designing a free online computer game that would spread awareness of hystocytosis and raise money to fight it.

“Sofia passed away six months ago,” Wardle said. “This is a rare disease, with 1,500 cases a year reported in the U.S. It’s like cancer, and it’s a blood-born illness produced in the bone marrow.”

“Wardle, 39, a computer programmer originally from England, moved to Aptos after meeting his wife Rebecca in 1992.

Doctors first diagnosed Sofia’s illness as leukemia. It would later appear to be in remission, but instead develop into histiocytosis.

“It started on the skin,” Wardle recalled. “Sofia developed these huge lesions, and they were very painful. She had them on her feet and couldn’t walk around.”

“Up until then, she had been a normal first-grader, a loving child who embraced life, a big sister and friend to her classmates at Rio del Mar Elementary School. A curly-headed child, she played the usual games, dress-up, stickers, music and dancing. She could hip-hop dance, too.

“But that ideal world shattered. “Just before Christmas of 2003, Sofia developed a fever, and her stomach was distended and firm to the touch,” Wardle said. “We took her to the doctor and were immediately sent to Dominican Hospital for blood tests. That was the beginning of our ordeal.”
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“Only 2 years old, she was one of the youngest patients at the Lucile Packard Children’s Hospital in Palo Alto. She would be ill for five years.

“The disease progressed slowly, and during the treatments there seemed to be successes. “It was a rollercoaster for us,” Wardle said. “At one point in 2008, the skin symptoms were getting better, or they seemed to be. But the disease was attacking other parts of her body.”

“The parents had insurance. However, the medical bills ran into the thousands of dollars as the child had to undergo an agonizing round of treatments, including chemotherapy and radiation. Though the pain at times was enough for her to cry out, her father said she bore it with courage and determination. She wanted to get dressed up for school, and go back and be with her classmates. Toward the end of her life, she was planning to become a singer, and had an iPod filled with her favorites: Hannah Montana, Hilary Duff and music from the theatre production, High School Musical.

“It’s amazing how much courage she had, and with good humor,” Wardle said of his daughter. “She taught us the meaning of bravery.”

Sofia was 7 at the time of her death. Her parents have a son Quinn, 5.

Wardle said the loss of his daughter was a blow that had him searching for a way to not only remember her, but to do something to try to find a cure for the disease so future children would not have to experience it. “I had to take an extended sabbatical from work,” he said.

Wardle called being Sofia’s father both a blessing and a tragedy, a struggle full of love and heartache. But, he noted, his daughter will always be an inspiration for him.

He created a Web site in Sofia’s memory called “Sofia Maze.”

An interactive challenge, the game involves helping Sofia navigate a multi-stage picture maze, from her home in Aptos, to the Lucile Packard Children’s Hospital. The game combines beautiful images, with jokes, visual humor and whimsical distractions.

“Low-tech gaming can be just as compelling as the latest offering from Sony or Nintendo,” Wardle said.

The game created by Sofia and her dad went live Friday. The site will promote sponsorships and raise funding through donations to fight histiocytosis, the money going to the Histiocytosis Association of America and Jacob’s Heart Children’s Cancer Support Services.

People wishing to donate to fight histiocytosis can call Sofia’s father at (831) 332-1021 or visit sofiamaze.com Sofia’s Maze.