Professor fights for rare disease cure

By Travis Ball
The Collegian

While Clark Kent has his phone booth, Carol Zapata-Whelan has fibrodysplasia ossificans progressive (FOP). She may not be able to leap tall buildings in a single bound, but raising a child with FOP has given her strengths to be a hero for the rare genetic disorder in other ways.

“Though FOP is rare, we cope with the issues that most families dealing with disability or chronic conditions face,” said Zapata-Whelan, who teaches Spanish and Hispanic literature at Fresno State.

“Obtaining support — medical, economic, social — lining up assistance at school, coping with surprises and learning to thrive under pressure.”

According to Zapata-Whelan, FOP hardens muscle and connective tissue, and occurs in about one in two million people. She said the disease first begins with painful masses that swell, migrate, subside then disappear and leave bone in their wake. FOP presents itself in the first or second decade of the carrier’s life, she said, and can lead to a catastrophic loss of mobility.

At this time there is no cure for FOP, and the disorder can be aggravated by trauma and stress.

Vincent, Zapata-Whelan’s son, was diagnosed with FOP when he was nine years old.

“It has been difficult accepting that something so rare and devastating can suddenly lodge itself in one’s life,” Zapata-Whelan said. When it was found that Vincent had FOP, she was unaware how serious the condition was, so at first the difficulty was in understanding what the disorder was rather than coping with it.

Now a pre-med student at Santa Clara University, Vincent is making his mother proud. Zapata-Whelan finds happiness in her son’s abilities — talents she would consider those of a super man.

“The joys have been in watching my son thrive despite FOP, despite pain and loss of mobility,” Zapata-Whelan said. “He is always pressing ahead, using all of his gifts — his talents for science and math, writing, music and a great generosity of spirit. His achievements are like those of an Olympian who must run with weights.”

Although she began her relationship with FOP being unaware, Zapata-Whelan now makes it a point to spread awareness. Her book, “Finding Magic Mountain: Life With Five Glorious Kids and a Rogue Gene Called FOP,” was released in September and is helping FOP research just in its sales. Zapata-Whelan is donating a percentage of the proceeds to the International FOP Association.

“This book is about FOP, but it is not about FOP,” Zapata-Whelan said. “FOP is a metaphor for what is difficult and what can ultimately unite us and help us grow, if we allow this to happen. Every family has its own version of FOP. Our story is universal — I could call it an adventure story, a suspense story, even a comedy, but mostly it is just a story about a family.”

Zapata-Whelan said her family provided encouragement before and after the book was done.

“My family was very supportive, and everyone agreed that sharing our lives on paper could make a difference in the world,” Zapata-Whelan said. “I’m hoping this notion proves true.”

Vincent said his mother did an amazing job with the book, and wants the message to reach those who don’t know about the existence of FOP. “I hope that it can spread the word,” he said.

Zapata-Whelan believes the fact that Vincent liked “Finding Magic Mountain” means she has already succeeded.

With Zapata-Whelan’s help, differences in the world of FOP have already been made.

In 2005 the world’s second FOP center was established at the University of California at San Francisco. Joseph Kitterman, a doctor at the pediatrics neonatology department at UCSF, has a grandson living with FOP. He met Zapata-Whelan at an FOP symposium in 2000, and their friendship was key in creating the FOP center at the university.

“She was the stimulus for forming this group,” Kitterman said. “She has been very instrumental in educating the non-medical public.”

Rather than trying to be a woman of steel, Zapata-Whelan said she takes an optimistic stand in life one day at a time.

“I’ve learned, and truly believe, that everything happens for a reason,” Zapata-Whelan said. “If we live through difficult events with faith, with a sense of purpose, what seems impossible becomes possible — miracles happen.”

Comment on this story in the News forum >>