Politics & Government

Ailing but feisty Fresno 11-year-old takes in Washington

WASHINGTON -- Fresno resident Milca Gutierrez has brittle bones and a resilient soul.

Milca's genetic bone condition has sent her to the hospital more than 180 times. Her bones keep breaking, and mending, and breaking again.

But the 11-year-old Powers Elementary School student also keeps bouncing back, and her fortitude pays off. This week, she's representing California in a national tour that includes meetings with everyone from Miss America on Monday to President Barack Obama on Tuesday.

Calling Milca a "constant source of optimism and encouragement, to herself and others," the Utah-based Children's Miracle Network named Milca one of 50 state representatives for this year's "Champions Across America" program. These are kids with grievous conditions and can-do attitudes.

"I'm not sad," Milca said Monday. "I'm always smiling."

Against all odds, it can certainly seem that way.

Milca was born with osteogenesis imperfecta, or brittle bone disease. At a moment's notice, sometimes without apparent provocation, bones will snap. Milca can chip her teeth by eating a peanut. Once, she broke her finger when she tried flicking a fly.

"My finger was just hanging there," Milca said, casually demonstrating.

The Children's Miracle Network helps support Children's Hospital Central California in Madera, where Milca is treated. The non-profit organization is joining with Walmart and Sam's Club in paying for the Champions Across America trip that began last week at Disney World in Orlando, Fla.

On Monday, the kids and their parents had lunch on Capitol Hill with an assortment of senators. Tuesday, they were to meet at the White House with Obama. In between group meetings, the families have been squeezing in excursions like a trip to the National Air and Space Museum. Milca said she likes space, and math, and science. She's talked of becoming a doctor herself.

The all-expense paid trip is a nice escape, although it's only a temporary getaway for a family facing financial stress. Milca's father, Abel, is a 41-year-old unemployed ironworker. He has been out of work since about November. Milca's mother, Alberta, makes some money on the side by cleaning houses. Medical expenses are unending, symbolized by the $23,000 the family spent for Milca's electric wheelchair.

"I feel bad for Children's Hospital," Alberta Gutierrez said. "They bill me and bill me, and I can't do anything about it."

Emotionally, too, the disease takes a tool. While Milca is constantly smiling in public, Alberta Gutierrez said, in private she can sometimes succumb for a moment. School can seem cold.

"In school, they just look at you, and they don't know what to say," Milca said.

Milca was diagnosed when she was about 40 days old. Her left leg and ribs were broken, evidently as she passed through the birth canal. At first, doctors feared child abuse, and they called police and immigration officials. Finally, they were able to pin down the cause.

Osteogenesis imperfecta is a relatively rare disorder, affecting between 25,000 and 50,000 U.S. residents. The exact number is unknown because the condition sometimes takes a mild form. Milca's condition appears to be in the mid-range, though now is a particularly tough time for her as she goes through a growth spurt.

Milca is not quite three feet tall. She has pins in both of her legs. She calculates that the longest time she has gone without breaking one bone or another is two and a half months.

"If I were to fall, I would break my leg or something," she says.

She sounds unfazed when she says it. This is her life. When asked to describe what a genetic condition means, she does so clearly and concisely.

"This is the first generation," Milca said. "When I grow up, and maybe have kids, maybe one of them might have it, too."