Like most teenagers, Stephanie Snow and Cassie Eckart have big hopes and dreams.

Snow, of Santa Maria, would like to be a veterinarian and is heavily involved with the local 4-H and Future Farmers of America, and she volunteers at the Santa Maria Valley Animal shelter.

Lompoc resident Eckart recently graduated from Cabrillo High School and wants to follow her artistic passions. She recently recreated some of Van Gogh's paintings in acrylic, but with her own interpretations. She plans to teach painting at a convalescent home in her hometown of Lompoc, has started taking classes at Allan Hancock College, and plans to take classes at Brooks Institute of Photography, as well.

Snow, now 16, is excited about driving. She currently drives her mother's van but would like to get a truck. Eckart, 18, said she could drive if she wanted to, but hasn't wanted to.

Both teenagers are special in their own way. And both have seemed to capture the hearts of Santa Maria residents who have joined in their battle to fight their disease of fibrodysplasia ossificans progressiva, a disease that causes bone to form in muscles, tendons, ligaments and other connective tissue.

When Eckart reaches out to shake hands her right arm and upper body are stiff, but her handshake is soft and gentle. Her voice is quiet, but thoughtful.

Sunday night, the annual fundraising dinner, is a special one for both girls, and they are excited for people to learn about the latest progress in fighting FOP.

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“It's been a good year,” Eckart explains. “I look forward to this night every year.”

Snow also shows a stiffening in her neck and arms from the disease, but her personality remains vibrant and outgoing. She lights up as she talks about the lamb and rabbits she recently showed at the Santa Barbara County Fair.

On Sunday night the two were in a room full of more than 450 people at the Santa Maria Elks Lodge, being served by an army of volunteers dishing up barbecued chicken and potatoes au gratin. And for dessert, the Madonna Inn of San Luis Obispo donated six gigantic cakes, each overflowing with toppings.

The girls mingled and laughed and paused for photos as the evening's attendants, who paid $25 each to participate Sunday, strolled past table after table of silent auction and raffle items.

Among those items was a painting called “Cassie's Interpretation of ‘Still Life: Poppies and Daisies' by Van Gogh,” painted by Eckart herself.

Last year the event raised $50,000 toward finding a cure for FOP.

“Every year I look forward to coming,” Snow said. “How amazing.”

The two Central Coast teens are two of only about 600 victims of the disease. Snow was diagnosed at 3; Eckart learned she had FOP when she was 9.

Snow said she can't believe how big the event has grown in the 14 years since her family started it. And she is grateful that people attend the event in order to find out more about FOP and do what they can to help.

“It's a great night,” she said. “It's good to see everybody.”

One of those attending was Suzie Doyle. She was Snow's teacher in elementary school and has been attending the annual dinner fundraiser for eight years. “She's a special girl,” Doyle said of Snow. “She always has been.”

Doyle also said she was amazed by the generosity and “the goodness” of the community.

Sunday's guest speaker was Dr. Eileen Shore of the University of Pennsylvania School of Medicine in Philadelphia.

Shore explained that in April 2006, after more than 15 years of research, her team of researchers identified the mutated gene linked to FOP and how that mutation changes the function of the gene.

“The gene works on two levels,” Dr. Shore said. “It affects (those with FOP) before birth in the bone forming process. (Then) they will begin to form bone in soft tissue and overtime it will be more extensive and progressive.”

There is currently no treatment to stop the new bones from forming in someone battling FOP. But anti-inflammatory drugs can help reduce inflammation when new bone is forming, and that, in turn, can stop or slow the process in that one area.

But because of the side effects, Snow said she only takes those types of drugs a handful of times each year when the disease starts working on her knees and hips.

Shore said she couldn't give any sort of timeline on when researchers may find a cure for the disease, but, she said, finding that gene gives doctors more options in thinking of ways to treat FOP and blocking the effects.

Eckart and Snow were both optimistic that finding a cure will only be a matter of time.

“It's not if they find a cure,” Snow said. “It's when.”

Steve Fairchild can be reached at 489-4206, Ext. 5014, or sfairchild@santamariatimes.com.

August 6, 2007